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Confidentiality in Health Care A Survey of Knowledge, Perceptions, and Attitudes Among High School Students Tina L. Cheng, MD, MPH; Judith A. Savageau, MPH; Ann L. Sattler, MD; Thomas G. DeWitt, MD Objective.-To assess adolescent knowledge, perceptions, and attitudes about tal consent for birth control and abor health care confidentiality. tion. In addition, managed care and oth Design.-Anonymous self-report survey with 64 items addressing confidential- er changes in health delivery have lim- ity issues in health care. ited adolescents' health care options and Setting.-Rural, suburban, and urban high schools in central Massachusetts. may influence perceived or actual pro- vision of confidential care. Participants.-Students in ninth through 12th grades from three schools. Results.-A total of 1295 students (87%) completed the survey: 58% had health concerns that they wished to keep private from their parents, and 69% from friends METHODS and classmates; 25% reported that they would forgo health care in some situations Sample Population if their parents might find out. There were differences in response by gender, race, During a 4-week period in the spring and school. About one third were aware of a right to confidentiality for specific health of 1992, we conducted a survey of ninth- issues. Of those with a regular source of care, 86% would go to their regular phy- through 12th-grade students in three sician for a physical illness, while only 57% would go there for questions about public high schools in central Massachu- pregnancy, the acquired immunodeficiency syndrome, or substance abuse that setts. School A is located in a rural, work- they wished to keep private. Sixty-eight percent had concerns about the privacy of ing-class community. School B is in an a school health center. upper-middle-class suburb of Worces- Conclusions.-A majority of adolescents have concerns they wish to keep ter. School C is in urban Worcester and confidential and a striking percentage report they would not seek health services serves a large population of poor stu- dents. Schools A and B have school because of these concerns. Interventions to address confidentiality issues are thus nurses. School C has a school-1 crucial to effective adolescent health care. health center that has been fully func- (JAMA. 1993;269:1404-1407) tioning for the past 4½ years (although gynecology examinations and contracep- PRIVACY is important to adolescents. en criteria for evaluating proposals to tion are not provided). As they struggle to forge a personal improve access to health care.³ There This study was approved by the Com- identity and establish social relation- has been little study, however, of ado- mittee for the Protection of Human Sub- ships, adolescents are particularly con- lescent confidentiality concerns and their jects in Research at the University of cerned about the judgments of others. effect on care-seeking behavior. Massachusetts Medical Center. Cooley¹ has described this egocentric perspective as the "looking glass self." Questionnaire Adolescent behavior, including care- See also P 1420. An anonymous self-report question- seeking behavior, can be powerfully in- naire was administered in homeroom at fluenced by concerns about privacy. There have been many reviews of stat- the three schools with the help of Consequently, assuring confidential- utes pertaining to consent and confiden- homeroom teachers. Instructions were ity is a basic principle of adolescent tiality, as well as guidelines for disclo- given over the intercom and surveys were health care. Confidential care for ado- sure of information. Some studies have collected in an envelope passed around lescents, however, is an issue with con- explored physicians' views on confiden- the room and sealed. Following written troversial medical, social, legal, ethical, tiality⁸ or the attitudes of adolescents notification of parents, passive CO it and bureaucratic implications. The on family planning and privacy.⁹¹¹ Oth- was presumed unless parents returned a American Academy of Pediatrics Policy ers have discussed youth attitudes about tear-off form withdrawing their child fr Statement Confidentiality in Adoles- health care delivery. 12,13 None, however, participation. Surveys and parental con- cent Health Care states that "adoles- has studied large numbers of adoles- sent forms were available in English and cents tend to underutilize existing health cents regarding their knowledge, atti- Spanish at school C, the only school with care resources," and that lack of confi- tudes, and perceptions about confiden- a sizable Spanish-speaking population. dentiality is "a significant access barrier tial health care or whether perceived The questionnaire contained 64 true/ to health care."2 The Society for Ado- lack of confidentiality affects adolescent false and Likert scale questions that lescent Medicine's Position Paper on behavior. were piloted and refined prior to the Access to Health Care for Adolescents This study begins to examine the in- study. The questions measured student emphasizes confidentiality as one of sev- teraction between perceptions of confi- knowledge of their rights in receiving dentiality and utilization of care. Un- confidential care, their perceptions about derstanding the importance of this bar- confidential health concerns and care- From the Department of Pediatrics, University of rier to health care is a crucial first step seeking behavior, their experiences with Massachusetts Medical Center, Worcester. to improve service delivery to this high- confidential health care, their percep- Reprint requests to Department of Pediatrics, Uni- risk group. It is particularly timely in tions about different health care loca- versity of Massachusetts Medical Center. 55 Lake Ave N, Worcester, MA 01655 (Dr Cheng). light of recent efforts to require paren- tions, and their attitudes about confi- 1404 JAMA, March 17, 1993-Vol 269, No. 11 Confidentiality in Health Care-Cheng et al dentiality on specific health issues. De- Table 1.-Characteristics of Survey Respondents mographic information including gender, School A, School B, School C, grade, race, and school were also col- Rural, % Suburban, % Urban, % jected. The survey was designed at a Characteristic (n=410) (n=183) (n=702) Total, % seventh-grade reading level and took Gender F 54.2 54.4 49.7 51.8 approximately 15 minutes to complete. M 45.8 45.6 50.3 48.2 Statistical Analysis Racial/ethnic group Asian American 0.8 0.5 9.6 5.5 Survey data were analyzed using Sta- Black 0.8 0.5 8.5 4.9 tistical Package for the Social Sciences/ Hispanic 6.0 0 25.5 15.6 Personal Computer Plus. Frequencies ofresponses to questions about attitudes, White 90.5 94.5 53.0 70.9 perceptions, and knowledge were tab- Other 2.0 4.5 3.4 3.1 ulated and x² tests with Yates' correc- Grade 9 26.8 24.6 29.4 27.9 tion were used to determine if any dif- 10 22.5 27.9 27.9 26.2 ferences existed with regard to gender, 11 grade, school, and race. If significant 27.8 21.8 21.4 23.5 differences were found, further strati- 12 23.0 25.7 21.3 22.5 fication was performed to analyze in- Has a place to go for health care 82.7 87.8 81.5 82.8 teractions between variables that may confound the results. RESULTS Table 2.-Perceptions of Adolescents Regarding Health Concerns, Care-Seeking Behavior, and Health Care Experiences (N=1295) Of the 1493 students present at the three schools on the day of the survey, Yes Responses, % 1295 (86.7%) returned completed surveys. Total Responses, % By Gender By School By Race Fourteen parents returned the form to withdraw their teenager from participa- Survey Item Yes No F M A and B c White Nonwhite tion in the survey. Table 1 presents char- "There are some health con- cems that I would not want acteristics of the respondents in each my parents to know." 57.9 38.8 64.2* 55.1 67.9* 52.9 63.6* 51.0 school. Notably, school C had significant- "There are some health con- more minority students than the other cerns that I would not want my friends and classmates two schools. The mean age of the respon- to know." 68.5 28.2 73.4 68.1t 76.3* 66.1 73.8* 64.8 dents was 16.2±1.4 years. "Would you ever not go for Students were asked about confiden- health care because your health concerns and care-seeking be- parents might find out?" 25.3 72.8 29.0* 21.3 32.2* 20.1 29.0* 16.6 havior (Table 2). Overall, 57.9% had "Would you ever not go for health care because your ;h concerns they would not want friends or teachers might parents to know and 68.5% had concerns find out?" 15.4 82.6 12.9 18.5* 19.0* 12.9 17.3t 11.5 they wished to keep private from friends "Since becoming a teenager, classmates. A total of 25.3% would when you have gone to get health care has anyone ever forgo health care if parents might find talked to you about privacy?" 43.8 54.4 55.6* 32.9 39.5 49.0* 42.3 49.9t out and 15.4% if friends or teachers might *Significant differences between yes responses, P<.01. out. Those with health concerns they tSignificant difference between yes responses, P=.01 to .05. wished to keep private were more likely to forgo health care than those without students and nonwhite students at school find out: 12.0% vs 18.4%; x²=9.20; P<.01). such concerns (35.8% vs 10.9%; x²=95.38; C when asked whether they had health Adolescents were asked about their P<.01). concerns they wished to keep private perceptions of different health care lo- Responses were analyzed with regard from parents or friends and whether they cations (Table 3). A list of five health to demographic variables of gender, would forgo health services because care locations (their regular physician's grade, race, and school. Females were friends might find out. However, white office, other physician's office, teen clin- more likely than males to have concerns students at school C were somewhat more ic or other clinic, emergency department, they wished to keep from parents and likely than nonwhite students to forgo and school health center) were given. thus forgo care. Females were less like- health services because parents might Respondents were asked to check off all ly than males to forgo care if friends or find out (24.4% vs 15.0%; x²=8.70; P<.01). locations where they would consider go- teachers might find out. White students When given the statement, "I have a ing for care if they had an illness "like a and rural and suburban students were doctor I can trust," 64.4% of all respon- bad sore throat," and also for "concerns more likely to have confidential concerns dents agreed, 31.1% disagreed, and 4.4% about pregnancy, AIDS [acquired im- and forgo care if parents, friends, or gave no answer. Over half (54.4%) of all munodeficiency syndrome], or drug or teachers might find out than nonwhite students had never discussed confiden- alcohol problems" that they "wanted to students and urban students. Re- tiality with a health care provider. Those keep private." For those respondents sponses did not differ by grade. who had discussed privacy with their phy- with a regular source of health care, To separate the effect of school from sician were less likely to forgo health 85.5% reported they would go to their race, data from school C (the school with care because of confidentiality concerns regular physician's office for an illness the highest proportion of lower-income than those who had not discussed priva- like "a bad sore throat," but only 56.9% students) were analyzed separately by cy (forgo care because parents might find would go to that physician's office for race. There were no significant differ- out: 21.8% VS 28.8%; x²=7.72; P<.01; for- private health concerns. Students were ences found between responses of white go care because friends or teachers might then asked to choose the single most JAMA, March 17, 1993-Vol 269. No. 11 Confidentiality in Health Care-Cheng et al 1405 5.-Attitudes of Adolescents Regarding Confidentiality on Specific I th Issues (N=1295) Total Responses, % Yes Responses, % Yes, Should No, Should By Gender By School By Race Keep Not Keep Health Issue Private Private F M A and B C White Nonwhite Plan to run away from home 32.2 64.5 33.9 33.3 32.1 34.3 34.1 32.7 Asgnancy 55.5 40.3 65.4* 50.4 64.8* 51.8 63.4* 46.2 plan to commit suicide 15.2 81.6 14.6 6.1 11.8 19.1* 13.4 21.2t Sexual abuse 19.7 77.3 20.3 19.7 18.7 21.6 18.9 24.0 Having sex 77.7 18.8 83.8* 77.7 86.7* 75.2 84.9* 69.9 Physical abuse 18.0 78.0 17.9 19.6 16.8 20.4 17.2 22.5t Sexually transmitted disease or venereal disease 46.3 50.1 53.6* 42.7 53.8* 42.9 52.4* 38.8 Nohol or other drug problem 34.7 62.0 32.4 39.6t 39.3t 32.9 37.4 31.9 Homosexuality 57.0 38.2 66.9* 52.4 68.7* 52.0 65.5* 46.0 NDS/HIV# Infection 35.2 60.3 39.8t 34.0 38.6 35.3 38.5 34.8 *Significant differences In yes responses, P<.01. Significant difference in yes responses, P=.01 to .05. AIDS indicates acquired immunodeficiency syndrome; HIV, human immunodeficiency virus. cerns and in willingness to seek care are ferent relationships with friends and fam- providers must be educated about con- intriguing. When controlling for school, ily. They may also stem from different sent and confidentiality guidelines. They both white and nonwhite students an- physiologic needs for care or a different need to be sensitive to confidentiality swered similarly regarding health con- concept of susceptibility and risk in re- issues in interactions with adolescents cerns that they wanted to keep private gard to these confidential issues. It is and parents (for example, seeing adoles- parents and peers. However, there also possible that care providers address cents and parents separately for part of was a difference by race in response to confidential issues differently in patients the visit) and in the way their office han- the question on forgoing care because of different gender. The differences by dles confidential information. Also, care parents might find out, with white stu- gender illustrated in this study may be providers must be educated about tech- dents less likely to seek care. It is un- important in strategies for intervention. niques to enhance communication be- if these differences reflect ethnic, The responses regarding confidenti- tween adolescents and their families. school, socioeconomic, or other differ- ality for specific health issues show that This study is an important first step One can hypothesize that in dif- students perceive the need to balance in addressing perceived confidentiality ferent racial or socioeconomic groups, privacy and disclosure. In particular, as a barrier to adolescent health care. relationships between adolescents and they appear to understand the need for Further study is needed to explore why their parents are based on different ex- disclosure in certain circumstances, de- adolescents underutilize health re- pectations. Further study of the inter- pending on the issue. However, most sources and to discern how aceptions ation among these variables is needed. lack knowledge of their legal rights in about confidentiality influence behav- Differences by gender were evident receiving confidential health care, again ior. Studies of adolescent, parent, and on many questions. More females than emphasizing the need for education. provider variables that influence ado- males had health concerns that they Addressing barriers to adolescent lescent health care perceptions are also wished to keep private from their par- health care, including perceived lack of necessary. This information is particu- ents and that would affect their behav- confidentiality, is necessary to reduce ad- larly important in light of policy efforts ior; more males than females had health olescent morbidity and mortality. Health to require parental consent for birth con- concerns they wished to keep private delivery systems must be structured to trol and abortion, and with changes in their peers. More females had dis- allow confidentiality, with mechanisms health delivery and financing that may I privacy with their providers. Fi- for appointment scheduling, billing, put confidentiality at risk. nally, females and males had different record keeping, and follow-up that en- 3 about disclosure of information on sure privacy for adolescents. Adolescents The authors thank Evan Charney, MD, David specific issues. These differences may re- must be educated regarding their rights Keller, MD, Suzanne Riggs, MD, and Ken Conca, flect different socialization of females and PhD, for critical review and help in arranging sites to confidential health care and how to for the school survey. Thanks also to the schools for males regarding these issues and/or dif- access that care. Similarly, health care allowing administration of the survey. References L Cooley CH. Quoted by: Resnick M, Blum RW, and confidentiality in adolescent health care. J Ad- Perspect. 1978;10:280-282. Hedin D. The appropriateness of health services olesc Health Care. 1980;1:9-17. 12. Resnick M, Blum RW, Hedin D. The appropri- for adolescents: youths' opinions and attitudes. 6. Holder AR. Minors' rights to consent to medical ateness of health services for adolescents: youths' I Adolesc Health Care. 1980;1:140. care. JAMA. 1987;257:3400-3402. opinions and attitudes. J Adolesc Health Care. 1980; Policy Reference Guide: A Comprehensive Guide 7. Leikin SL. Minor's assent or dissent to medical 1:137-141. American Academy of Pediatrics Policy State- treatment. J Pediatr. 1983;102:169-176. 13. Marks A, Malizio J, Hoch J, Brody R, Fisher M. ments Published Through December 1991. Elk 8. Lovett J, Wald MS. Physician attitudes toward Assessment of health needs and willingness to uti- Grove Village, Ill: American Academy of Pediat- confidential care for adolescents. J Pediatr. 1985; lize health care resources of adolescents in a sub- ties; 1991:97. 106:517-521. urban population. J Pediatr. 1983;102:456-460. 1 Klein JD, Slap GB, Elster AB, Schonberg SK. 9. Zabin LS, Stark HA, Emerson MR. Reasons for 14. Jellinek B. Adolescents' knowledge of consent Access to health care for adolescents: a position delay in contraceptive clinic utilization. J Adolesc laws in a Massachusetts community. Pediatr Nurs- paper of the Society for Adolescent Medicine. Health Care. 1991;12:225-232. ing. 1980;6:21-23. Adolesc Health. 1992;13:162-170. 10. Torres A, Darroch Forrest J, Eisman S. Telling 15. Office of Technology Assessment. Adolescent English A. Treating adolescents: legal and eth- parents: clinic policies and adolescents' use of fam- Health, III: Crosscutting Issues in the Delivery of in considerations. Med Clin North Am. 1990;74: ily planning and abortion services. Fam Plan Per- Health and Related Services. Washington, DC: Of- 1097-1112. spect. 1980;12:284-292. fice of Technology Assessment; June 1991. Publi- Hofmann AD. A rational policy toward consent 11. Torres A. Does your mother know? Fam Plan cation OTA-H-467. AMA. March 17. 1993-Vc! 269, No. 11 Confidentiality in Health Care-Cheng et al 1407 Table 3.-Perceptions of Adolescents on Confidentiality of Health Care Locations (N=1295) might find out. This study confirms the Adolescents Willing to Use notion that perceived lack of confider. Health Care Location, %* Adolescents' Assessment of tiality may be a barrier to health care Location Privacy, %t for some adolescents. For Private Health Care Location For Illness Concern Most Private Least Private The majority of students (89%) were Regular physician's office 77.5 50.5 63.6 5.5 able to choose the correct definition of Other physician's office 5.9 10.7 6.8 4.7 the word "confidential." However, only Teen or other clinic 11.5 44.6 23.1 5.9 about one third were aware of their right Emergency department 16.1 2.4 1.5 28.0 to confidential care for certain health School health clinic 13.7 12.4 3.1 51.0 issues, confirming results of a small study of adolescents in Massachusetts. 14 Less *Students were asked to check off all locations where they would consider going for care. than half of the respondents reported tStudents were asked to choose the single most private and least private locations. ever having talked about privacy with's health care provider. Clearly, educating Table 4.-Adolescent Knowledge of Confidentiality Laws (N=1295) adolescents about confidentiality in Answer health care is needed. Those students who had discussed privacy in a health "Don't Question Correct, % Incorrect, % care setting were more likely to go for Know," % care. This finding may reflect the effec- "In your state, teenagers can get treatment for sexually transmitted tiveness of patient-provider discussions disease or venereal disease with- of confidentiality, although this may be out parents' knowing." 35.3 18.8 43.8 confounded by utilization. "In your state, a teenager with a drug problem can get treatment There have been reports regarding without his/her parents' knowing." 29.9 21.4 47.0 the difficulty care providers have in de- veloping a confidential relationship with adolescents, independent of the already- private and least private health location health providers should keep specific established provider/parent relation- from the same list of five locations (Ta- health issues confidential and responses ship. 13,15 We found that a large percent- ble 3). The regular physician's office was were again analyzed with regard to de- age of respondents would go to their chosen most frequently (63.6%) as of- mographic variables (Table 5). Differ- regular physician for private health con- fering the most privacy, while a school ences were found by gender, school, and cerns and the majority ranked their phy- health center was selected most often as race. Differences were also found by sician's office as the most private place. having the least privacy. Overall, 51.0% grade, with students of lower grades However, fewer would see their physi- of respondents felt a school health cen- more likely to favor disclosure on issues cian if they had a private health concern ter was the least private among the five of running away, pregnancy, suicide, sex- such as pregnancy, AIDS, or alcohol or locations listed. This was not significant- ually transmitted diseases, and the hu- other drug problems. Multiple avenues ly different among the three schools even man immunodeficiency virus and AIDS. of health access may be necessary to though only school C has a school-based meet the needs of adolescents as well health clinic. However, when given the COMMENT education of both providers and patients statement, "A school health clinic is good This article describes the knowledge, about confidentiality issues. about keeping things private," signifi- perceptions, and attitudes about the con- Great concern was expressed about cantly more students from school C fidentiality of health care of adolescents the confidentiality of school-based health agreed (41.2%) compared with students in three high schools in central Massa- centers. The majority of students felt it from the other two schools (34.0%; chusetts. A possible limitation is the gen- was the least private place to go c x²=6.44; P=.01). Also, when given the eralizability of findings to other popu- pared with a physician's office, adoles- statement, "I might not use a school lations. In addition, use of schools as a cent clinic, or emergency department. health clinic because other people (stu- survey site underrepresents high-risk Students at the one school with a school- dents, teachers, parents) might find out groups of students who are not enrolled based health center (school C) were about my private business," more stu- or may be chronically absent. There are somewhat more favorable in their as- dents in school C disagreed (39.2%) than also drawbacks in the use of self-report sessment of the privacy of a school health did respondents from the other two questionnaires because of the difficulty center, although a majority still ex- schools (23.2%; x²=36.30; P<.01). of validating replies. Finally, under- pressed concerns. Clearly, perceptions The survey also asked respondents to standing the impact of adolescent per- of this school health center cannot be choose the definition of the word "con- ceptions about confidentiality in health generalized to students at other schools fidential" from among four possible care on care-seeking behavior is diffi- with health centers. It is possible that choices (to put an end to, to confirm, to cult because what adolescents say they students have little experience with or keep a secret, to believe). Eighty-nine will do (ie, regarding forgoing care) may understanding of school-based health percent checked the correct definition, be different from what they actually do. clinics. They may also confuse the role a proportion that did not significantly Our survey questions, however, did show of the school nurse with the very dif- differ by grade. Students were also asked strong internal consistency and, for the ferent role of an independent health clin- questions to assess their knowledge of questions discussed, good face validity. ic located at a school. Nonetheless, the their rights in seeking confidential care Our findings indicate that a large pro- survey confirms adolescent skepticism for specific health issues (Table 4). Un- portion of adolescents have health con- about the confidentiality of school health like the question defining "confidential," cerns they wish to keep private. Of im- care and emphasizes the importance of only about one third of the respondents portance, one fourth of the adolescents establishing procedures to ensure con- were knowledgeable about their rights reported that they would not seek health fidentiality at these sites. to confidential care. care for these concerns if they thought The differences by school and race in Adolescents were asked whether that their parents, friends, or teachers attitudes about confidential health con- 1406 JAMA, March 17, 1993-Vol 269, No. 11 Confidentiality in Health Care-Cheng et al prials Editorials represent the opinions of the authors and THE JOURNAL and not those of the American Medical Association. Making a Difference in Adolescent Health It has been said that a society is ultimately judged by its sonal behavior and health, we must offer all our adolescents attention to its weakest members. While not our weakest, the educational foundation and opportunities they need to adolescents are perhaps the most vulnerable members of our develop life-styles that incorporate health promotion and dis- society, as they make the transition from childhood to adult- ease prevention practices. hood. Adolescence is a period of profound change. More chang- As Arkansas' state health director, one of us (M.J.E.) has es take place in anatomy and physiology, mental and emotional been offering six prescriptions to respond to contemporary functioning, and social development during adolescence than in adolescent health needs. any other life stage except infancy. The attitudes and behav- 1. Universal, early childhood education will prepare our iors molded during adolescence often determine the life-style children to learn and achieve, removing some of the disad- and health habits of adulthood, creating long-term health im- vantages that hold them back. Given the success of Head plications. Improving the health status of adolescents is critical Start in improving school performance, there is no good rea- to improving the health status of the population. son for not fully funding Head Start so all eligible children How well are we doing as a society in attending to the may participate. health needs of adolescents? Consider the leading mortalities 2. Comprehensive health education should be taught to all and morbidities of today's youth: children, starting in kindergarten and continuing through high Injury and violence account for three of four adolescent school. An age-appropriate, sequential approach to school-based deaths.¹ health education would provide every child with a foundation Homicide is the second leading cause of adolescent deaths, of knowledge for risk-reducing and health-promoting behav- with a 186% increase among 15- to 24-year-olds from 1960 to iors. A comprehensive curriculum provides teaching on growth 1989.¹ and development, nutrition, safety, first aid, injury prevention, Suicide is the third leading cause of adolescent deaths, environmental health, tobacco and other substance use and with a 156% increase among 15- to 24-year-olds from 1960 to abuse, consumer and community health, disease prevention 1989.¹ and control, mental and emotional health, and family life. Infection with the human immunodeficiency virus is now 3. Parents need more support in fulfilling their parenting the sixth leading cause of death among 15- to 24-year-olds.¹ responsibilities. For our future parents, today's children, this About one in ten 15- to 19-year-old girls gets pregnant support can begin through a comprehensive school health 1 year.2 education curriculum. For today's parents, more parenting Thirty-six percent of high-school students report cur- education programs need to be provided, through which par- rent use of tobacco, 36.9% report binge drinking, 13.9% report ents can learn child growth and development and effective current marijuana use, and 2.1% report current cocaine use.³ communication and discipline. Adolescents are more likely to be sexually, physically, and 4. Male responsibility needs reinforcement. Family plan- emotionally abused than any other age group of children. Ap- ning and sex education have traditionally focused on young proximately 26 of every thousand 12- to 17-year-olds have been females. This strategy tacitly absolves young males of sexual victims of abuse or neglect compared with 16 of every 1000 responsibility. Some young males have few opportunities children between 6 and 11 years of age, 10 per 1000 children other than procreation to prove themselves. Accordingly, 3 to 5 years of age, and six per 1000 children under 2 years of they must have opportunities for growth and self-expression age.4 in other arenas of life. While chronic medical and psychiatric disorders affect ap- 5. School-based clinics can increase access to primary and proximately 6% of adolescents, many more adolescents today preventive health care. They are logical partners of compre- are at risk for death and other poor health outcomes that are hensive school health education. If children are taught health not primarily biomedical in origin.4 Contemporary threats to promotion practices, there should be an increased demand for adolescent health are largely the result of social environment preventive health care. Providing health care in schools makes and/or behavior. Recognizing the strong link between per- services nearly universally accessible. 6. Opportunities for higher education should be guaran- From the Arkansas Department of Health, Little Rock. teed. All adolescents who make good grades, exhibit good Reprints not available. citizenship, and have a low family income should be guaran- JAMA, March 17, 1993-Vcl 269, No. 11 Editorials 1425 teed assistance at state-supported colleges. of effort, we can assist our adolescents in making a successful These prescriptions would require greater expenditures in transition to adulthood. the recommended areas. At issue is whether we want to pay M. Joycelyn Elders, MI now or pay later. We can pay more for strategies that make Jennifer Hui an investment in our children's health and future, or we can 1. National Center for Health Statistics. Health United States 1991. Atlanta, Ga: UE continue to pay for costly intervention and treatment of pre- Dept of Health and Human Services, Public Health Service, Centers for Disease Control and Prevention; 1992. DHHS publication PHS 92-1232. ventable problems. 2. Children's Defense Fund. An Opinion Maker's Guide to Children in Election Yea 1992. Washington, DC: Children's Defense Fund; 1991. Our greatest chance of improving the health status of our 3. 1990 Youth Risk Behavior Surveil System: Chronic Disease and Health adolescents lies in early and ongoing protection and promo- Promotion Reprints From the MMWR. Atlanta, Ga: US Dept of Health and Humai tion of their health and development. As a society, we must Services, Public Health Service. Centers for Disease Control and Prevention National Center for Chronic Disease Prevention and Health Promotion; 1990. value our children enough to make a universal commitment 4. American Medical Association. America's Adolescents: How Healthy Are They: to their future. With a consensus of values and a collaboration Chicago, III: American Medical Association, Department of Adolescent Health; 1990 Profiles NLO12690. Cholesterol Testing in Young Adults Prudent or Profligate? America's cardiovascular establishment has strongly sup- lipoprotein cholesterol (HDL) and, debatably, of triglyceride ported the National Cholesterol Education Program (NCEP) levels adds predictive value for some subgroups of patients and its clinical guidelines for detection and management of the LDL-to-HDL or TC-to-HDL ratio is also widely advo dyslipidemias.¹ In this issue of JAMA, Hulley et al² tren- cated. However, evidence for targeting treatment based or chantly criticize the NCEP guidelines for young adults-men these measures draws largely on post hoc analyses from I under 35 years of age and premenopausal women. They con- trial in middle-aged men where overall mortality and mor- clude that routine testing of all such persons every 5 years is bidity yields remain debatable.⁷ Newer markers, especially of unproven effectiveness for prolonging life, very inefficient lipoprotein(a) and apolipoprotein B, should further improve from an economic and clinical standpoint, and perhaps un- the predictive value of lipid testing, but their use in inter ethical given that primary preventive maneuvers alter the vention trials has been minimal.8 lives of otherwise well persons. The poor predictive performance of the isolated TC leve is not surprising, given that there are other potent risk fac tors for CHD. Selective testing based on nonlipid risk factor: See also p 1416. and family histories of CHD or dyslipidemias is thus one way to narrow the ambit of initial case-finding, but a proportion Underpinning their criticisms is a simple observation. In of patients with isolated dyslipidemias will be missed. Hulle: isolation, an elevated total cholesterol (TC) or low-density et al believe that this is tolerable, since dyslipidemias is lipoprotein cholesterol (LDL) level is a mediocre marker for isolation among young adults confer such low absolute short short-term and even longer-term risk of coronary events. 8,4 term and intermediate-term risks of CHD. This is especially SO for young men and premenopausal wom- Their critique highlights the lack of all-cause mortalit en where coronary heart disease (CHD) is a rare cause of benefits in lipid treatment trials among persons without pre death. There is no discrete point beyond which all or even existing CHD. Duration of follow-up may partly explain th most persons develop CHD. Instead, there are trade-offs in findings, but trial evidence is inconsistent for a link between the ratio of "true positives" to "false positives": the propor- duration of follow-up and extent of all-cause mortality ben tion of subjects treated who would not have developed CHD efit. Moreover, as the authors argue, longer treatment als in the next few years rises as one lowers the threshold value means longer exposure to drug side effects. separating "normal" from "abnormal" serum TC levels. 3,4 Since Hulley et al discuss trial meta-analyses and more circum the incidence of CHD in young adults is already very small, stantial evidence showing how cholesterol lowering migh aggressive testing and treatment of this population is par- cause harm. MacMahon,9 in contrast, has argued that th ticularly inefficient. increases in cancer or violent death in treated subjects are no Would other lipid tests help? Measurement of high-density significant when one aggregates all 26 completed cholestero. lowering trials, echoing the criticism by Chen etal¹⁰ of "Se From the Institute for Clinical Evaluative Sciences in Ontario, and the Department lective" meta-analyses. But the fact that 60% of all deaths i of Medicine, Sunnybrook Health Science Centre, University of Toronto (Ontario). Dr these trials were due to CHD9 underscores the importance Naylor is supported as a career scientist of the Ontario Ministry of Health. Reprint requests to Sunnybrook Health Science Centre, Room G2, 2075 Bayview separating secondary from primary prevention trials in mets Ave, Toronto, Ontario, Canada M4N 3M5 (Dr Naylor). analyses and younger from older adults in policymaking. A Council Report Confidential Health Services for Adolescents Council on Scientific Affairs, American Medical Association DURING the past 20 years rates of sui- need for confidentiality as a normal part The delay or failure to seek necessary cide,¹ illicit drug use,2 sexually trans- of human development. Policy recom- care may result in more serious short- missible diseases (STDs),³ and births to mendations for confidential care for ad- or long-term complications. single mothers4 have increased dramat- olescents are included at the end of the Adolescents are more likely to seek ically among adolescents. The changing report. necessary medical treatment, particu- nature of adolescent morbidity and mor- larly for problems of a sensitive nature, tality makes it critical that they receive ADOLESCENTS' NEED FOR if they can do 80 without their parents' medical care on a timely basis, and that CONFIDENTIAL HEALTH SERVICES knowledge. A 1982 survey¹⁰ of 180 sub- barriers to care are removed.5 One such A major developmental task of ado- urban New York City adolescents found barrier for many adolescents is their lescence is learning how to make appro- that if parental knowledge were man- concern about whether sensitive infor- priate decisions about education, employ- datory, only 45% of adolescents would mation shared in private with their phy- ment, social relationships, and health be- seek medical services for depression, sician will remain confidential. haviors. Physicians can help adolescents 19% for birth control, 15% for STDs, and to incrementally assume greater respon- 17% for drug use. If assured that med- sibility for health behaviors and decisions ical treatment would be confidential, an See also p 1404. by providing a context in which the ad- additional 12% indicated that they would olescent may candidly discuss concerns, seek care for depression, 50% more This report reviews adolescents' need worries, and health-risk behaviors. would seek care for STDs, and 49% more for confidential health services and sup- Privacy is essential to process. Con- would seek care for drug use. The desire port by physicians and organized med- fidentiality refers to the privileged and for confidential medical care has led some icine for confidential care. Examined are private nature of information provided adolescents to use community clinics or two major barriers to confidential med- during the health care transaction. It is school-based health centers rather than ical care: the prerogative to provide in- generally acknowledged to be a corner- seek health services from their primary formed consent for medical treatment stone of the physician-patient relation- and payment for health services. The ship and "essential to a patient's trust in report describes how physicians can bal- a health care provider and to a patient's Members of the Council on Scientific Affairs ance parental involvement and adoles- willingness to supply information can- include the following: Yank D. Coble, Jr, MD. cents' needs for privacy in health care didly for his or her benefit. " Exceptions (Vice-Chairman), Jacksonville, Fla; E. Har- decisions and strategies to allay paren- to confidentiality include information re- vey Estes, Jr, MD (Chairman), Durham, NC: tal concerns and help them view the quired by third parties for billing pur- C. Alvin Head, MD (Resident Representa- poses or when the law requires disclo- tive), Tucker, Ga; Mitchell S. Karlan, MD, Bev- From the Council on Scientific Affairs, American sure (eg, a threat to inflict bodily harm, erly Hills, Calif; William R. Kennedy, MD, Min- Medical Association, Chicago, III. cases of communicable diseases, gun shot neapolis, Minn; Patricia Joy Numann, MD. This report was presented at the 1992 House of Del- and knife wounds, or child abuse). 7.8(p51) Syracuse, NY; William C. Scott, MD, Tucson, egates Annual Meeting as Report A of the Council on Ariz; W. Douglas Skelton, MD, Macon, Ga: Scientific Affairs. The recommendations were adopted Uncertainty about whether health ser- as amended, and the remainder of the report was filed. Richard M. Steinhilber, MD, Cleveland, Ohio: This report is not intended to be construed or to serve vices will be confidential is perceived by Jack P. Strong, MD, New Orleans, La; Chris- as a standard of medical care. Standards of medical both physicians and adolescents as a fac- tine C. Toevs (Medical Student Representa- care are determined on the basis of all the facts and tor that may lead some adolescents to tive), Greenville, NC; Henry N. Wagner, Jr. circumstances involved in an individual case and are suppress relevant information or delay MD, Baltimore, Md; Jerod M. Loeb, PhD (Sec- subject to change as scientific knowledge and tech- nology advance and patterns of practice evolve. This or avoid medical visits.9 Lack of candor retary), Chicago, III; Robert C. Rinaldi, PhD report reflects the scientific literature as of June 1992. makes it harder for the physician to iden- (Assistant Secretary), Chicago, III; Janet E. Reprint requests to the Group on Science and Tech- tify and provide appropriate treatment Gans, PhD (staff author), Chicago, III. nology. American Medical Association, 515 N State St, Chicago, IL 60610 (Janet E. Gans, PhD). for the adolescent's medical problems. 1420 JAMA, March 17, 1993-Vol 269, No. 11 Health Services for Adolescents-Council on Scientific Affairs Care physician. 11,12 There is no evidence ed programs and urged that "obstacles INFORMED CONSENT AS A that adolescents receive inferior care in to the distribution of birth control in- BARRIER TO CONFIDENTIAL these settings, but continuity of care formation, medication, and devices HEALTH SERVICES FOR from a physician with greater under- should be removed, and physicians ADOLESCENTS standing of the family unit and the in- should provide contraceptive services dividual adolescent's need and capabil- on a confidential basis where legally per- Informed consent means that the in- ities may be sacrificed in the process. missible. "18 The AMA policy states that dividual can understand the diagnosis, Many adolescents fear that physicians while consultation with parents or other the risk and benefits of a proposed pro- will report confidential information to adults may be beneficial, "physicians cedure or treatment, alternative proce- their parents. In a 1982 survey of com- should not feel or be compelled to re- dures and treatments and their associ- munity clinics in 37 counties, one of four quire minors to obtain consent of their ated risks, and the consequences of not adolescents reported choosing a family parents before deciding whether to un- undergoing the proposed procedure and planning clinic because they thought that dergo an abortion. [M]inors should treatment. The individual must also be their physicians would inform their par- ultimately be allowed to decide whether able to decide voluntarily whether to ents about the visit. These fears appear parental involvement [in abortion deci- proceed with the physician's recommen- to be somewhat exaggerated; 80% of sions] is appropriate." dation.9 Consent from a person legally physicians living in those counties re- In 1988, the American College of Ob- entitled to authorize medical care must ported that they would provide such ser- stetricians and Gynecologisis, the Amer- be obtained before medical care can be vices to unmarried minors younger than ican Academy of Pediatrics, the Amer- given, regardless of age. The traditional 18 years of age, and 63% would do so ican Academy of Family Physicians, and legal requirement of parental consent without parental consent. 11 the National Medical Association joint- for the health care of minors reflects ly endorsed policy recommendations on legal proscriptions against minors en- PHYSICIAN SUPPORT FOR confidentiality to guide the development tering into binding contracts (which in- CONFIDENTIAL HEALTH SERVICES of public policy. 20 The recommendations cludes the physician-patient relation- FOR ADOLESCENTS state that health professionals should ship) and the presumption that minors Physician support for adolescent con- provide the best possible care to ado- lack the developmental capabilities re- fidential health services depends on the lescents and encourage parental partic- quired to make decisions about their age and maturity of the adolescent, the ipation in their care when appropriate. health care.22 nature of the presenting problem, and They encourage physicians to work with During the second half of this centu- the age and specialty of the physician. A parents to facilitate payment, appoint- ry, the courts and state statutes created 1983 national survey¹³ of adolescent med- ments, and other matters that reflect exceptions to parental consent require- icine specialists and board-certified pe- the confidential nature of arrangements ments for certain categories of minors diatricians found that 83% of physicians made. They conclude that "ultimately, and certain types of medical services. favor confidential care for 17-year-olds, the health risks to adolescents are SO Adolescents serving in the armed forces 66% for 14-year-olds. A 1987 na- impelling that legal barriers and defer- or living away from home and managing ti al survey by the American Medical ence to parental involvement should not their own financial affairs are consid- A ciation (AMA)¹⁴ found that 63% of stand in the way of needed care."20 ered emancipated minors and are legal- physicians support confidential health More recently, the AMA National Ad- ly permitted to consent to treatment on servi for 15- 17-year-olds, and 39% olescent Health Coalition21 prepared a the same basis as adults. States also for 12- to 14-year-olds. Between 79% compendium of recommendations on con- allow mature minors to provide informed 94% of physicians favor confidential fidential health services for adolescents, consent. 23,24 These are adolescents less contraceptive services (depending on the which describes the policies of each or- than the age of 21 years who, although age of the adolescent), and 48% to 60% ganization on diverse topics related to living at home as dependents, demon- favor confidential care for adolescents confidentiality. Members of the Coali- strate the cognitive maturity reporting illicit drug use. 13 Physicians tion include specialty societies in med- to understand the risks and benefits than the age of 50 years are more icine, psychiatry, and the allied health of a proposed medical treatment and likely than older physicians, and obste- professions, public health associations, its alternatives and who can decide trician-gynecologists are more than private foundations, and federal agen- voluntarily whether to undergo the twice as likely as physicians in other cies who are active in adolescent health. treatment. 25,26 specialties to support the use of confi- The compendium was designed to edu- Since the 1960s, states have also de- dential health services for adolescents.¹⁶ cate health professionals and policymak- veloped medical emancipation statutes, State statutes regarding confidential ser- ers about the need for confidential health which specify the types of medical ser- vices, concerns about liability, and the services for adolescents, to prompt or- vices to which minors may consent with- provision of preventive and diagnostic ganizations to develop or clarify policy out parental consent or notification. Most treatment also affect physician support.¹⁶ recommendations on this topic, and to states allow minors to consent to preg- Organized medicine has supported enhance adolescent access to health ser- nancy care (including prenatal and post- confidential health services for adoles- vices. Twelve of the 22 membership or- natal care, delivery services, and treat- cents, both for specific conditions and in ganizations had policy recommendations ment for complications), contraceptive terms of general guidelines for the de- supporting confidential health services services, treatment for STDs,2⁷ and al- velopment of public policies. In 1967, for adolescents. Half or more of the or- cohol and other drug abuse treatment. the AMA took the position that to stem ganizations supported the general need Fewer states have statutes permitting the incidence and prevalence of STDs, for confidential services, the need for minors to consent to inpatient or outpa- minors needed to receive treatment for physicians and providers to explain the tient mental health counseling and treat- suspected STDs without parental noti- limits of confidentiality to adolescents ment. 23,28 (There are no known cases in fication. 8(p291) The AMA¹⁷ opposed regu- and parents, and the need to encourage which a physician has been successfully lations requiring parental notification for adolescents to involve parents in med- sued for providing nonnegligent treat- the provision of prescription contracep- ical matters, but not to make parental ment to a minor aged 15 years or older tives to minors through federally fund- involvement a barrier to care. without parental consent. 11 Health Services for Adclescents--Coundi on Scientific Affairs 1421 The most publicly contested limita- Rather than promoting parental in- would not seek clinic care if their tion on minors prerogative to consent to volvement, mandatory notification laws ents had to be told, but fewer than care centers on the early termination of appear to have the unintended effect of in 100 said that they would discontinue pregnancy. At least 38 states require increasing health risks to the adolescent sexual relations. parental consent or notification before a by delaying the termination of pregnan- In sum, while the intent of mandatory minor may have an elective abortion. cy or forcing the adolescent into an un- parental consent laws is to en ce fam- These states, however, are required by wanted birth. After Massachusetts en- ily unity, improve parent-child commun- law to establish a judicial bypass pro- acted mandatory parental consent stat- nication, protect adolescents from make cedure to enable minors to obtain a court utes in 1981, court proceedings delayed ing deleterious decisions, and reduce order authorizing the termination of the abortion procedure by an average of abortions, there is limited evidence that pregnancy without first informing their 4 to 5 days, with some abortions delayed the law has these effects. A majority of parents. Under precedents established by nearly 6 weeks.³ The law had little adolescents who want an abortion con- by the Supreme Court, "the Constitu- impact on the number of adolescents sult their parents regardless of statutes tion does not recognize any independent who conceived and elected to terminate mandating consent or notification. The interest of the parents in the outcome of the pregnancy. However, the number vast majority who elect judicial bypass the abortion decision. The pregnant mi- of adolescents leaving the state to ter- rather than consult parents are granted nor has a privacy interest which encom- minate a pregnancy climbed steadily in authorization to make the decision about passes both independence in decision- the months following enactment of the the course of the pregnancy. These making and non-disclosure of intimate law.³⁶ Of the 477 adolescents in Massa- tend to increase the health risks to the information."3 chusetts who chose a judicial bypass adolescent by delaying medical care. It The legal need for consent triangu- rather than informing parents, the judge is unclear whether these findings also lates the adolescent patient-physician assessed all but nine as mature and au- characterize the use of medical serv relationship by bringing parents or le- thorized them to consent to the proce- for other problems, such as the treat- gal guardians into health care decision dure. In eight of the nine remaining ment of drug abuse or mental d rders. making. Few would deny that most ad- cases, the judge determined that the olescents would benefit from the advice abortion was in the minor's best inter- PAYMENT AS A BARRIER TO and counsel of a parent or other adult on est. The ninth minor left the state to CONFIDENTIAL HEALTH SERVICES important decision affecting their health, terminate her pregnancy rather than FOR ADOLESCENTS and the AMA and several primary care appeal the decision. Confidential health care for adoles- specialty societies support parental in- Somewhat similar results were found cents may be compromised ultimately volvement, as appropriate.² At issue is after Minnesota adopted its parental no- by the economic realities of medical whether legal requirements that man- tification requirement in 1981. The pro- treatment. Adolescents who rely on their date parental involvement have the ef- portion of second-trimester abortions in- parents' private insurance need to rec- fect of enhancing parent-adolescent com- creased 12%; court proceedings delayed ognize that the insurance claim sent to munication or family unity. Proponents the procedure by 1 to 3 weeks.3 For parents will list the services provi of mandatory parental consent, partic- some adolescents, the length of these thereby compromising confidentiality. ularly in decisions about adolescent preg- delays precluded the termination of the Adolescents living in families receiving nancy, maintain that parents have a right pregnancy. However, the abortion rate Medicaid are also likely to have diffi- to know and participate in decisions af- and birth rate among 15- to 19-year-olds culty obtaining confidential care. Most fecting their child's health and well-be- in Minnesota fell between 1981 and adolescents cannot enroll in Medicaid ing.³² Opponents of these laws maintain 1983. It is possible that adolescent wom- without the family's involvement be- that mandatory parental consent can de- en took greater precautions to avoid cause applicants must provide financial lay or deter adolescents from seeking pregnancy after enactment of this law. information in order to determine eli- timely medical care and exacerbate the It is also possible that these trends re- gibility. In many states the adolescent risks associated with an existing health flect increased concern about STDs and must show the family's Medicaid card or problem. 32 These laws may endanger ad- human immunodeficiency virus infection a Medicaid sticker in order to the olescents who live in dysfunctional fam- among adolescents, and/or a greater coverage, and these must be obtained ilies or who fear hostile or abusive re- awareness and availability of birth con- through the parent. Some states 1 sponses from their parents. 22,33 trol following a 20% increase in funding parents who receive Medicaid a month- for family planning services in Minne- ly itemized list of services provided to IMPACT OF MANDATORY sota during 1980 and 1981. There is family members. Although this is meant PARENTAL CONSENT little evidence that large numbers of ad- to deter fraud, it may also prevent some Only a handful of studies have exam- olescents left Minnesota to terminate a adolescents from seeking needed med- ined the impact of mandatory parental pregnancy in a state without parental ical care. 43 consent on adolescents' use of health ser- notification laws.³⁴ State statutes allowing minors to con- vices. Those studies have focused exclu- Most adolescents (55%)⁴¹ inform par- sent to medical treatment typically hold sively on reproductive health services, ents about their use of reproductive the adolescent rather than the parent especially the decision to terminate a health services, and 61% involve them liable for payment.25.29 Exceptions in- pregnancy. Overall, mandatory parental in decisions about pregnancy. 33,42 Man- clude emergency treatment or treatment consent does not appear to significantly datory parental consent and notification given under court order. However, few increase the proportion of adolescents laws are unlikely to convince adolescents adolescents can afford to pay for their who consult their parents about a preg- who choose not to inform parents about own medical care,44 and few physicians nancy. For example, in a 1984 study, these visits to do SO. Forty-five percent can provide subsidized care on a regular 65% of adolescents in Minnesota and 62% of unmarried adolescent females attend- basis. of adolescents in Wisconsin reported con- ing Planned Parenthood clinics in 10 Health maintenance organizations and sulting their parents. Minnesota had en- states reported that they had not in- some prepaid health plans may be bet- acted a mandatory parental consent stat- formed their parents about the clinic ter able to offer confidential services to ute, Wisconsin had not. visit. Of these, 80% reported that they adolescents because care is provided 1422 JAMA, March 17, 1993-Vol 269, No. 11 Health Services for Adolescents-Council on Scientific Affairs !without disclosing the nature of the vis- ers) include suicidal ideation or for im- tion and counseling apart from parents. it in a bill for services. Increased access mature minors or minors with limited The same confidentiality will be pre- to low-cost or free community clinics or competence.² served between the adolescent patient to school-based clinics would also en- Primary care physicians and adoles- and physician as between the parent (or hance confidentiality and would be es- cent medicine specialists usually encour- responsible adult) and the physician. pecially helpful for adolescents living in age parental involvement believing that 6. Encourage state and county med- poor and low-income families. However, most adolescents benefit from the coun- ical societies to become aware of the because most adolescents are covered sel and support of concerned and caring nature and effect of laws and regula- by private insurance or public insurance parents. Some problems-hospitaliza- tions regarding confidential health ser- (74% and 9%, respectively ), it is critical tions or treatment for drug abuse or vices for adolescents in their respective that third-party payers develop a sys- mental health problems-are difficult or jurisdictions. State medical societies tem for listing services that preserves impossible to manage without parental should provide this information to phy- confidentiality for adolescents. participation. When the parent is part sicians to clarify services that may be of the problem, or when informing the legally provided on a confidential basis. PHYSICIAN ROLE IN THE parent would not be in the patient's best 7. Urge undergraduate and graduate PROVISION OF CONFIDENTIAL interest, physicians have the authority medical education programs and con- HEALTH SERVICES to provide medical treatment on a con- tinuing education programs to inform TO ADOLESCENTS fidential basis under a fairly broad set of physicians about issues surrounding mi- Confidential health care is sometimes rules determined by case and statutory nors' consent and confidential care, in- portrayed as a contest of rights between law.25 cluding relevant law, and implementa- parents and adolescents. In this sce- Physicians are under no legal obliga- tion into practice. nario, the physician may be seen as ei- tion to provide a specific service or treat- 8. Encourage health care payers to ther moderating or fueling conflict be- ment requested by a minor if it conflicts develop a method of listing of ser- tween parents and adolescents. How- with their moral principles.⁸⁾⁾⁾ One al- vices that preserves confidentiality for ever, confidentiality is better understood ternative in such cases is to advise adolescents. as a part of normal adolescent develop- the adolescent about where to go for 9. Encourage state medical societies ment in which the adolescent learns to help and when appropriate, to make a to evaluate laws on consent and confi- me greater responsibility for his or referral. dential care for adolescents and help her own health and health care and pur- eliminate laws that restrict the avail- sues the growing need for privacy. RECOMMENDATIONS ability of confidential care. Both physicians and parents have a The AMA remains concerned about role to play in this process. As the child the serious health problems facing ad- References gains maturity and experience, the de- olescents and the corresponding imper- 1. Fingerhut LA, Kleinman JC. Trends and cur- gree of confidentiality may also increase. ative that adolescents receive needed rent status in childhood mortality: United States, 1900-85. Vital Health Stat 3. 1989;No. 26. When the physician finds the adolescent medical care. It is important to ensure 2. Johnston LD, O'Malley PM, Bachman JG. Illicit capable of autonomous decision making, that confidentiality is consistent with Drug Use, Smoking, and Drinking by America's he or she becomes a full partner in the adolescents' developmental and physi- High School Students, College Students, and Young physician-patient relationship; at this cal needs. Therefore, the Council on Sci- Adults: 1975-1987. Washington, DC: US Dept of Health and Human Services; 1988. Publication ADM time the physician must determine entific Affairs recommends that the 89-1602. whether the adolescent is capable of giv- AMA: 3. Shafer MA, Irwin CE Jr, Sweet RL. Acute sal- ing informed consent. 1. Reaffirm that confidential care for pingitis in the adolescent female. J Pediatr. 1982; At all times, the physician should in- adolescents is critical to improving their 100:339-350. 4. Pittman K, Adams G. Teenage Pregnancy: An form parents and minors about the con- health. Advocate's Guide to the Numbers. Washington, DC: ditions under which confidential care will 2. Encourage physicians to allow Children's Defense Fund; 1988. be provided and when it will be abro- emancipated or mature minors to give 5. Gans JE, McManus MA, Newacheck PW. Ado- gated. This should include any arrange- informed consent for medical and psy- lescent Health Care: Use, Costs, and Problems of Access. Chicago, Ill: American Medical Association; ments for the adolescent to have inde- chiatric care without parental consent 1991. pendent access to health care, including and notification, in conformity with state 6. National Conference of Commissioners on Uni- financial arrangements. Many physicians and federal law. form State Laws. Uniform Health Care Informa- meet separately with adolescents and 3. Encourage physicians to involve tion Act, Uniform Laws Annotated, Part I. St Paul, Minn: West Publishing Co; 1988;9:475-520. parents, allowing each to express their parents in the medical care of the ado- 7. Council on Ethical and Judicial Affairs. Current concerns independently in a confiden- lescent patient, when it would be in the Opinions-1989. Chicago, Ill: American Medical As- tial context. Most parents and adoles- best interest of the adolescent. When, in sociation; 1989:section 5.05. cents are comfortable with this arrange- the opinion of the physician, parental 8. Council on Long Range Planning and Develop- ment. AMA Policy Compendium. Chicago, Ill: ment, particularly those who have an involvement would not be beneficial, pa- American Medical Association; 1990. ongoing relationship with a physician.45 rental consent or notification should not 9. Hofmann AD. A rational policy toward consent At times the physician and adolescent be a barrier to care. and confidentiality in adolescent health care. J Ad- may disagree about whether informing 4. Urge physicians to discuss their olesc Health Care. 1980;1:9-17. 10. Marks A, Malizio J, Hoch J, Brody R, Fisher M. parents is in the adolescent's best in- policies about confidentiality with par- Assessment of health needs and willingness to uti- terest or critical to effective treat- ents and the adolescent patient, as well lize health care resources of adolescents in a sub- ment. 26,46 In such cases, the physician as conditions under which confidential- urban population. J Pediatr. 1983;102:456-460. can offer to inform the parents (with the ity would be abrogated. This discussion 11. Chamie M, Eisman S, Forrest JD, Orr MT, Torres A. Factors affecting adolescents' use of fam- adolescent's permission), to be present should include possible arrangements for ily planning clinics. Fam Plann Perspect. 1982;14: when parents are informed, or to dis- the adolescent to have independent ac- 126-139. ( with the adolescent ways to inform cess to health care (including financial 12. Mosher WD. Use of Family Planning Services parents on his or her own.46 The rare arrangements). in the United States: 1982 and 1988. Hyattsville, Md: National Center for Health Statistics; 1990. occasions for overriding adolescents' ob- 5. Encourage physicians to offer ad- Publication PHS 90-1250. jections and informing parents (or oth- olescents an opportunity for examina- 13. Lovett J, Wald M. Physicians' attitudes toward JAMA March 17. 1993-Vol 269. No. 11 Health Services for Adolescents-Council on Scientific Affairs 1423 confidential care for adolescents. J Pediatr. 1985; Schwarzenberg; 1991. courts: the B husetts c( statute. Am J 106:517-521. 24. English A. E ring access to health care for Public Health. 1988;78:646-649. 14. Harvey LK, Shubat SC. 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Opposition to HHS Reg- and Treatment Programs Serving High-Risk Youth. tions fell after Minnesota imposed parental notifi- ulations on Contraceptive Services to Minors. Chi- Washington, DC: Center for Substance Abuse Pre- cation law. Fam Plann Perspect. 1991;23:240. cago, Ill: American Medical Association; December vention; 1990. Publication ADM 90-1674. 41. Torres A. Does your mother know? I Plann 1988. Resolution 65. 29. Holder AR. Disclosure and consent problems in Perspect. 1978;10:280-282. 19. Council on Ethical and Judicial Affairs, Amer- pediatrics. Law Med Health Care. 1988;16:219-228. 42. Zabin LS, Hirsch MB, Emerson MR, Raymond ican Medical Association. Mandatory parental con- 30. Holder AR. Minors' rights to consent to med- E. To whom do inner-city minors talk about their sent to abortion. JAMA 1993;269:82-86. ical care. JAMA. 1987;257:3400-3402. pregnancies? adolescents' communication with par- 20. American College of Obstetricians and Gyne- 31. Crosby MC, English A. Mandatory parental ents and parent surrogates. Fam Plann Per cologisis. ACOG Statement of Policy: Confidenti- involvement/judicial bypass laws: do they promote 1992;24:148-154, 173. ality in Adolescent Health Care. Washington, DC: adolescents' health? J Adolesc Health Care. 1991; 43. English A, Tereszkiewicz L. School- American College of Obstetricians and Gynecolo- 12:143-147. Health Clinics: Legal Issues. San Francisco, Calif: gists; 1988. 32. Donovan P. Our Daughters' Decisions: The Con- National Center for Youth Law; 1988. 21. American Medical Association National Coali- flict in State Law on Abortion and Other Issues. 44. Fisher M, Marks A, Trieller K, et al. Are ad- tion on Adolescent Health; Gans J, ed. Policy Com- New York, NY: The Alan Guttmacher Institute; olescents able and willing to pay the fee for pendium on Confidential Health Services for Ad- 1992. dential health care? J Pediatr. 1985;107:480-483. olescents. Chicago, Ill: American Medical Associa- 33. Henshaw SK, Kost K. Parental involvement in 45. King N, Cross AW. Children as decision- tion; 1993. minors' abortion decisions. Fam Plann Perspect. ers: guidelines for pediatricians. J Pediatr. ] 22. English A. Legal and ethical concerns. In: Mc- 1992;24:197-207, 213. 115:10-16. Anarney ER, Kreipe R, Orr DP, Comerci GD, eds. 34. Blum RW, Resnick MD, Stark TA. The impact 46. Silber TJ. Justified paternalism in adolescent Textbook of Adolescent Medicine. Philadelphia, Pa: of parental notification law on adolescent abortion health care: cases of anorexia nervosa and sub- WB Saunders Co; 1992. decision-making. Am J Public Health. 1987;77:619- stance abuse. J Adolesc Health. 1989;10:449-453. 23. Neinstein LS. Adolescent Health Care: A Prac- 620. tical Guide. 2nd ed. Baltimore, Md: Urban & 35. Yates S, Pliner AJ. Judging maturity in the 1424 JAMA, March 17, 1993-Vol 269, No. 11 Health Services for Adolescents-Council on Scientific Affairs INFORMATION / COMMENTS requested date: 12 March 1996 to: Peter Edelman, Asst Secty for Planning and Evaluation Jennifer Klein from: Felicia H. Stewart MD, Deputy Asst Secty for Population Affairs re: Adolescent Sexuality and Public Policy: A Liberal Response by Lainie Friedman Ross Overview: This manuscript argues that "specialized consent statutes are an inappropriate solution to adolescent sexuality." The analysis also notes that "such statutes endorse deception," and are "illiberal in that they circumvent parental decision-making authority," and that "recent legislation and court decisions in the United States usurp parental power on health care issues pertaining to adolescent sexuality and reproduction" [emphasis mine]. The analysis is centered on a hypothetical dilemma, which the author asserts is "relatively common in pediatrics," involving a 14 year old who might seek confidential care from her pediatrician to obtain prescription contraception despite the fact that her family would, because of devout Catholic religious beliefs, prohibit use of contraception, and would not approve of premarital sexual activity. Comment: Using "loaded" language (see emphases in the preceding paragraph) the analysis misconstrues the origins and reasons for existing statutes, as well as their effects-creating "straw men" to be dispatched. For example, by characterizing such statutes as a "solution" to adolescent sexuality, the author implies that someone believed them to be so. No one I know! Rather, availability of confidential services is but one part of an appropriate set of responses to serious and difficult, multifaceted, public health problems. The statutes and legal precedents involved are not "recent," and these are not new problems. The issues involved have been carefully weighed by many thoughtful, experienced, and deeply concerned people. Confidential health services for adolescents is such an important issue that the AMA Council on Scientific Affairs undertook a comprehensive review in 1992, and concluded that "confidential care for adolescents is critical to improving their health."¹ Similar deliberations have been undertaken, with similar policy recommendations reached, by more than 30 national professional organizations. The hypothetical case upon which "moral arguments" and conclusions in this analysis are based, also seriously misrepresents the nature of the problems involved. Contrary to the author's assertion, it is not at all common for a 14 year old to seek confidential contraception care. Half of all teens do not initiate sexual activity before age 17. Among 14 year- olds, although 23% have had intercourse, more than half (60%) have had involuntary intercourse.² So when a 14 year old seeks such health care, whether or not accompanied by a parent, the health issues are far more serious than contraception. In most cases, the issues of sexual assault or incest must be addressed, and appropriate resources and referrals arranged, and in most cases there will be, in addition, state reporting requirements related to abuse or neglect. The very fact of sexual activity at age 14 is so defined in many jurisdictions. Statistics are slightly less severe for teens at age 15 (30% have had intercourse, 40% of those involuntarily),² but still a very serious health concern. The clinician's role in caring for very young teens, therefore, is first concerned with the teen's safety and health, and second with helping the teen acquire resources, knowledge and self- knowledge, and skills in negotiation and planning, that can help him or her avoid future exposure to unwanted sexual experiences. This role is not fairly described as "endorsing deception" or "approving or condoning responsible adolescent sexual activity;" it is a possible life-line for rescue in a situation where parental support has already proven to be insufficient. The policy analysis in this manuscript, based on a highly atypical, hypothetical young teen situation, does not adequately represent the scope of the issues involved for young teens, nor the true dilemmas for mid-age teens, and ignores entirely the largest group involved- the nearly-adult minors. Background: The author is a pediatrician, recently turned philosopher (with Ph.D. from Yale anticipated in 1996). She is a member of the Univ. of Chicago, Department of Medicine Faculty. Previous publications listed on the Univ. of Chicago world-wide-web home page include: "Spheres of Political Order" (written with David Schmidtz) forthcoming in Nomos; "Justice for Children: The Child as Organ Donor" in Bioethics (1994); and "Moral Grounding for the Participation of Children as Organ Donors" in Journal of Law, Medicine, and Ethics (1993). The manuscript (apparently) will be published in Politics and the Life Sciences, a refereed but obscure journal. It is not included on the normal journal search lists, but was tracked down with the help of two extraordinary research librarians at the Parklawn reference library. It is published twice yearly for the Association of Politics and Life Sciences, by a British firm, Beechtree Publishing. Telephone information from the publisher indicates that the journal has a circulation of about 1,000, two-thirds of which is in the U.S. Its authors also are mostly from the U.S. We have requested a complimentary copy, and will forward it to you when it arrives. References: 1 Anon. Report of the Council on Scientific Affairs: Confidential Health Services for Adolescents, 1992. Reprint request to the Group on Science and Technology, American Medical Association, 515 North State Street, Chicago, Il 60610 (Janet E. Gans, PhD). ²Patricia Donovan et al. Sex and America's Teenagers. New York: The Alan Guttmacher Institute, 1994. adolescent health VOLUME III: CROSSCUTTING ISSUES IN THE DELIVERY OF HEALTH AND RELATED SERVICES CONGRESS OF THE UNITED STATES USING OTA CONGRESS OFFICE OF TECHNOLOGY ASSESSMENT Recommended Citation: U.S. Congress, Office of Technology Assessment, Adolescent Health-Volume II: Back- ground and the Effectiveness of Selected Prevention and Treatment Services, OTA-H-466 (Washington, DC: U.S. Government Printing Office, November 1991). # For sale by the U.S. Government Printing Office Superintendent of Documents, Mail Stop: SSOP, Washington, DC 20402-9328 ISBN 0-16-035981-3 Adolescent Health Roger C. Herdman, Assistant Director, OTA Health and Life Sciences Division Clyde J. Behney, Health Program Manager Project Staff Denise Dougherty, Senior Associate/Project Director Jill Eden, Senior Analyst Kerry B. Kemp, Senior Analyst/Division Editor Kelly Metcalf, Research Analyst1 Kirsten Rowe, Analyst² Gloria Ruby, Senior Analyst Pamela Simerly, Analyst Andrea Solarz, Carnegie Detailee³ Urvi Thanawala, Research Assistant⁴ Paul Robertson, Research Assistant⁵ Other Staff James Havel, Carnegie Contractor⁶ Charlotte Clarke, Carnegie Contractor¹ Elizabeth Anglarill, Work Study Student⁸ Helima Croft, Summer Intern⁹ Jennifer Hart, Summer Intern¹⁰ Alex Ching, Summer Intern¹¹ Rachel Wolfe, Research Assistant Heather Francese, Research Assistant Administrative Staff Virginia Cwalina, Office Administrator Carolyn Martin, Word Processor Specialist¹² Eileen Murphy, P.C. Specialist Marian Grochowski, Word Processor Specialist Until July 1990 2From October 1988 to March 1990 From December 1988 to August 1990 *From June 1990 5From September 1990 6From April to September 1990 From May to August 1990 *From November 1989 to May 1990 From May 1990 to August 1990 10From June 1988 to August 1988 ¹From June 1991 to August 1991 ¹²Until June 1991 > Contractors LaRue Allen, Ph.D., University of Maryland and Christina Mitchell, Ph.D., New York University* Trina Anglin, M.D., Ph.D., Cleveland Metropolitan General Hospital* Lois Bergeisen, Gaithersburg, MD Barbara Burns, Ph.D., Duke University, Carl A. Taube, (deceased 9/28/89), Johns Hopkins University, and John E. Taube, University of Maryland* Paul Casamassimo, D.D.S., M.S., Children's Hospital, Columbus, OH Johanna Dwyer, D.Sc., R.D., New England Medical Center Hospital, and Carol N. Meredith, University of California at Davis James Emshoff, Ph.D. and Ronnie Margolin, Georgia State University* Mathea Falco, J.D., New York, NY Ronald A. Feldman, Ph.D., Columbia University Michelle Fine, Ph.D., University of Pennsylvania James Garbarino, Ph.D., Erikson Institute Josephine Gittler, J.D., Mary Quigley-Rick, J.D., and Michael J. Saks, Ph.D., University of Iowa Robert Guntow, Hyattsville, MD Thomas Hoffman, Washington, DC Angela Holder, LL.M., Yale University* Jonathan Klein, M.D., M.P.H., Milton Kotelchuck, Ph.D., and Gordon H. DeFriese, Ph.D., University of North Carolina at Chapel Hill* Barry Krisberg, Ph.D., National Council on Crime and Delinquency* Richard Kronick, San Diego, CA* Spero Manson, Ph.D., University of Colorado Margaret McManus, M.H.S., Harriette Fox, M.S.W., Paul Newacheck, D.P.H., Lori Wicks, and Rebecca Kelly, McManus Health Policy, Inc. Gary B. Melton, Ph.D. and Lois B. Oberlander, M.A., University of Nebraska-Lincoln Scott Menard, Ph.D., University of Colorado Larry Mi'ike, M.D., J.D., University of Hawai'i* Edward P. Mulvey, Ph.D., Michael A. Arthur, M.A., and N. Dickson Reppucci, Ph.D., University of Pittsburgh D. Wayne Osgood, Ph.D., and Janet K. Wilson, University of Nebraska-Lincoln* Carol Runyan, M.P.H., Ph.D., Elizabeth A. Gerken, M.S.P.H., and Laura S. Sadowski, M.D., M.P.H., University of North Carolina Stanley Sue, Ph.D., University of California, Los Angeles, and Nolan Zane, University of California at Santa Barbara* Dalmas A. Taylor, Ph.D., Wayne State University, and Phyllis A. Katz, Ph.D., Institute for Research on Social Problems* H. Rutherford Turnbull, Esq., J.D., LL.M. and Lisa Dorrill, M.A., University of Kansas Robert Valdez, Ph.D., University of California, Los Angeles* Margaret West, M.S.W., Ph.D. and Sally N. Stuart, M.S.W., University of Washington* *Supported by Carnegie Corporation of New York and the Carnegie Council on Adolescent Development. vl CONSENT AND CONFIDENTIALITY IN ADOLESCENT HEALTH CARE DECISIONMAKING1 Introduction making capacity-the power to make their own decisions about services. Several empirical studies Who should decide whether an adolescent is that challenge the legal presumption about the provided health services, what health services are incompetency of minors to make health care deci- provided, and how health services are provided? The sions are summarized in the second part of this adolescent? The adolescent's parents or legal guard- chapter. ian? Health professionals? The state? And who should decide whether adolescents' communica- It is important to recognize, however, that con- tions with health professionals and health care cerns about adolescents' competency to make deci- records are to be treated as confidential? sions are not the only rationale for parental consent requirements. Several other rationales for such The question of how authority for adolescent requirements are reviewed in the discussion that health care decisionmaking should be allocated has follows, among them the state's interest and fami- been much debated-and is far from being settled. lies' interest in encouraging family involvement in The body of law that determines how this authority minors' lives and health care providers' interest in is allocated-including the extent of parental in- being able to receive compensation for the services volvement in adolescent health care decisionmaking- they provide to minors. is summarized in this chapter. That body of law is large and complicated and is not always clear or How the law should allocate authority for making consistent, in part because it is an amalgam of decisions about adolescent health care has tradition- decisions of State and Federal courts, statutes passed ally been a matter for the individual State govern- by Congress and State legislatures, and regulations ments to determine, but the allocation of authority is issued by executive departments and agencies. or can be controlled or influenced to some extent by The common law rule-to which there are many the Federal Government acting through the Federal notable exceptions identified in this chapter-is that courts, Congress, and Federal agencies. If it chose to, parental consent is generally required for the medi- Congress could increase the Federal Government's role in the formulation of more uniform or coherent cal or surgical care of a minor child (i.e., a son or daughter who has not reached the age of majority, policies pertaining to the allocation of authority for either age 18 or 19, depending on the State). The adolescent health care decisionmaking. That and rationales for parental consent requirements are other possibilities are discussed, and a conceptual several. One rationale is that minors lack the framework for public policy formulation in allocat- capacity to make their own health care decisions and ing authority for adolescent health care decision- need to be protected from their own improvident making is presented, in the concluding section of decisionmaking. The legal presumption that minors this chapter. are incompetent rests at least in part on an assump- tion of courts and legislators that minors as a class lack the requisite capacity to make health care Law Pertaining to Consent and decisions for themselves. Recently, the factual Confidentiality in Adolescent validity of that assumption has been increasingly Health Care Decisions criticized on the ground that it inequitably denies minors in middle or late adolescence-many or most The large and complicated body of law that of whom may actually have the requisite decision- determines the allocation of authority for adolescent This chapter is based on a February 1990 background paper entitled "Adolescent Health Care Decisionmaking: The Law and Public Policy," prepared for OTA's Adolescent Health Project under contract to the Carnegie Council on Adolescent Development by J. Gittler, M. Quigley-Rick, and M.J. Saks. That background paper has been published separately in its entirety, including extensive legal citations, and is available from the Camegie Council on Adolescent Development, Washington, DC, or from OTA. -111-123- III-124 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services health care decisionmaking is summarized below.2 State but Alaska, Nebraska, and Wyoming, where Much of the law focuses on the nature and extent of the age is 19. States can modify the age of majority parental involvement in adolescent health care to confer upon minors rights normally reserved for decisionmaking, including whether an adolescent's adults, and five States (Alabama, Kansas, Rhode parents must consent to the delivery of health Island, South Carolina, and Oregon⁴) have enacted services to the adolescent and whether an adoles- statutes that specifically authorize minors who have cent's parent must be notified of the adolescent's reached a designated age-ranging from 14 to decision to obtain health services or of the adoles- 16-to consent to health care. cent's actual receipt of health services. The parental consent requirement reflects the As noted in the introduction, the body of law that application to minors of the tort law doctrine of determines the allocation of authority for adolescent informed consent, as well as principles under health care decisionmaking is not always clear or contract law. As discussed later in this chapter, the consistent, in part because it is an amalgam of legal doctrine of informed consent is based on the principles and rules drawn from different areas of premise that every person has the right to determine law (e.g., tort law, contract law, family law, and what is done to his or her own body. The doctrine of constitutional law) and different jurisdictions, and in informed consent holds, therefore, that physicians part because it consists of decisions of Federal and and surgeons have a duty to give their adult patients State courts, statutes passed by Congress and State the information necessary for making an informed legislatures, and regulations issued by executive and voluntary choice concerning medical treatment departments and agencies. For at least some adoles- or surgery; the failure by a physician or surgeon to cents, a lack of information about what services they obtain informed consent from a patient may give rise can or cannot receive without parental consent or to a civil liability and an award of damages.⁵ In notification may be a barrier to their seeking or addition, under contract law, the relationship be- receiving certain types of health services. For other tween a doctor and an adult patient is usually adolescents, the barrier may be the substance of the considered a contractual relationship. Among the laws requiring parental consent or notification rather essentials of any contract are competent parties. than confusion about what the law allows. Traditionally, minors have been deemed incom- Parental Consent Requirements petent as a matter of law to give informed consent to medical and surgical care and incompetent to enter Anglo-American law draws a sharp distinction into binding contracts, including contracts with between adults and minors, and it is well established physicians and surgeons. Thus, parental consent has that minors have fewer rights and more restrictions been required for provision of health services to on their liberty than adults (27,33). It is also well minors. established that parents have a right to care, custody, and control of their minor children (83). Perhaps not The rationales for parental consent requirements surprisingly, therefore, the common law rule is that in the area of health care are several. One of the main parental consent is generally required for the medi- rationales for the parental consent requirement- cal or surgical care of a minor child.³ The age of based on the assumption that minors lack the majority is determined by individual States. Cur- requisite capacity to make health care decisions-is rently, the age of majority is set at age 18 in every the need to protect minors from their own improvi- ²Although the focus of this OTA Report is on "adolescents" defined as individuals ages 10 to 18, the law regards 10- to 18-year-olds not as "adolescents" but as either "minors" or "adults." Since 18-year-olds are legally considered adults in all but three States, most of the issues about adolescent health care decisionmsking raised in this chapter pertain to adolescents ages 17 and under. 3See, for example, Bonner V. Moran, 75 App. D.C. 156, 126 F.2d 121, 123 (D.C. Cir. 1941); Rogers V. Sells, 178 Okia. 103, 61 P.2d 1018 (1936); Browning V. Hogan, 90 W. Va 568, 111 S.E. 492 (1922). See Institute of Judicial Administration and American Bar Association, Juvenile Justice Standards Project, Standards Relating to Rights of Minors (47); G.D. Dodson, "Legal Rights of Adoleacents: Restrictions on Liberty, Emancipation, and Status Offenses" (33); and R. Bennett, "Allocation of Child Medical Care Decision-Making Authority: A Suggested Interest Analysis" (19). ALA. CODE § 22-8-4 (1984); KAN. STAT ANN. I 38-123b (1986); R.I. GEN. LAWS s 23-4. 6-1 (1985); S.C. CODE ANN. 5 20-7-280 (Law. Co-op. 1985); OR. REV. STAT 4 109.640 (1981). The law of torts protects persons against unauthorized bodily invasion. Bodily contact with a patient by a physician or surgeon without the patient's consent constitutes technical battery, which is a tort (53). Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-125 dent decisionmaking.⁶ Accepting for the sake of the family as an institution and of individual family argument that minors in fact need protection from units. The U.S. Supreme Court has commented in a their own improvident decisionmaking, there re- series of decisions on the importance of family ins the question of why parents have been legally autonomy and parental authority, and the Court has authorized to make health care decisions on behalf extended Federal constitutional protection, albeit of their minor children. There appear to be two not absolute protection, to family autonomy and operative premises in this regard: 1) that parents, in parental authority. 10 The parental consent require- contrast to their minor children, possess the intelli- ment also seems, at least somewhat, to be designed gence, maturity, and experience needed for adequate to protect parents from financial liability arising and appropriate health care decisionmaking; and 2) from the provision of health services, without their that parents usually have an identity of interest with consent, to their children and to ensure providers of their minor children and will act in their best the availability of a payment source for the services interests. In at least some situations, parents and they provide to minors. their adolescent children do not have an identity of interest, and sometimes their interests may conflict.⁷ Exceptions to the Parental Consent It is precisely such situations that give rise to Requirement concerns that parental consent or notification re- quirements may create barriers to adolescents' Over the years, the number of exceptions to the seeking or receiving certain types of health services. parental consent requirement applicable to the health care of minors has grown significantly. Another rationale for the parental consent require- Exceptions to the parental consent requirement, ment-apart from the need to protect minors from described below, tend to fall into four categories: their own improvident decisionmaking-is a belief exceptions arising out of the jurisdiction of that the parental consent requirement promotes juvenile and family courts over abused and family autonomy⁸ and privacy and promotes paren- neglected minors, tal authority9 and control of minor children. Family exceptions related to the status and characteris- autonomy and parental authority, in turn, are often tics of individual minors (e.g., emancipated, lewed as fostering the stability and cohesiveness of independent, or mature minors), in dealing with issues of consent to health care for minors, State courts and lower Federal courts have consistently expressed concern about the decisionmaking capabilities of minors. In Bonner V. Moran, 75 App. D.C. 156, 126 F.2d 121, 122 (1941), for example, the court stated: "In deference to common experience, there is general recognition of the fact that many persons by reason of their youth are incapable of intelligent decisions, as a result of which public policy demands legal protection of their personal as well as their property rights." In recent years, the U.S. Supreme Court, in dealing with issues concerning access of minors to contraceptives and abortions and the civil commitment of minors, has similarly expressed concern about the decisionmaking capabilities of minors. For example, in Parham V. JR., 442 U.S. 584, 602, 603 (1978). the court stated: "Most children, even in adolescence, simply are not able to make sound decisions, including their need for medical care or treatment." See also Bellotti V. Baird, 443 U.S. 622, 633, 640 (1978), reh. denied, 444 U.S. 887 (1979); Planned Parenthood of Missouri V. Danforth, 428 U.S. 52, 91 (1976) (Stewart, J., concurring); Carey V. Population Services International, 431 U.S. 678, 709 (1977) (Powell, J. concurring); Carey V. Population Services International, supra at 714 (1977) (Stevens, J. concurring). 7For a further discussion of how the interests of an adolescent, the adolescent's parents, the state, and health providers may differ, see box 17-B in the concluding section of this chapter. *Family autonomy refers to noninterference by the state in the right of families to make important decisions concerning family life and family members. A tradition of family autonomy is deeply imbedded in Anglo-American law and can be traced back to Roman law, the Judeo-Christian tradition, and Angio-Saxon customary law. Family autonomy is often but not always equated with parental authority (42). Parental authority refers to the deference of the state to the right of parents to make childrearing decisions (42). At common law, minor children were in effect the chattels or property of their parent, who had virtually the unfettered right to rear them as they saw fit. Over time, minor children increasingly have been recognized as having independent rights (45), yet they are still largely subject to the authority of their parents. 10In a line of decisions over 50 years, the U.S. Supreme Court has held that parents have a Federal constitutional right to direct the upbringing of their children free from state intervention in the absence of a constitutionally acceptable justification for such intervention. The Court's most notable decisions in this regard are Meyer V. Nebraska, 262 U.S. 390 (1923); Pierce V. Society of Sisters, 268 U.S. 510 (1925); Prince V. Massachusetts, 321 U.S. 158 (1944); and Wisconsin V. Yoder 406 U.S. 205 (1972). See also Ginsburg V. New York 390 U.S. 629, 634 (1968), reh. denied, 391 U.S. 971 (1973). In another line of decisions, the U.S. Supreme Court has afforded minors some of the same constitutional rights that adults are afforded in areas that do not directly implicate parents' right to direct the upbringing of their children. See, for example, In re Gault, 387 U.S. 1 (1967); Tinker V. Des Moines Independent Community School District, 393 U.S. 503 (1969); and Goss V. Lopez, 419 U.S., 565 (1975). In recent years, the U.S. Supreme Court has begun to confront conflicts between a parent's asserted right to direct the upbringing of his or her minor child and the minor's assertion of his or her own independent rights and has issued several decisions involving actual or potential parent-child conflicts with respect to the access of minors to contraceptives and abortions and the civil commitment of minors. Taken as a whole, however, the results and rationales of the Supreme Court's decisions do not reflect a coherent approach to such conflicts. III-126 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services exceptions for health emergencies, and statutory authorization-may use various factors in exceptions for specific health problems and determining whether a minor's emancipation has services (e.g., services related to sexual activi- taken place. Emancipation may be found to have ties, drug and alcohol abuse, or mental health). occurred in accordance with an express agreement As noted in the discussion that follows, some of the between a minor's parents and the minor or may be exceptions apply to certain categories of minors implied from the acts of the minor's parents and the regardless of their age, and others are directed at or minor. The main indicia of emancipation implied affect primarily adolescent minors. For a number of from the acts of the parties are a minor's marriage, exceptions to parental consent requirements for a minor's induction into the armed services, a specific health problems, as will be discussed later, minor's establishment of a home away from that of there are now in place parental notification require- his or her parents, a minors' economic independence from his or her parents, and a minor's age (50). ments. Emancipation under common law may be complete Exceptions Arising From Juvenile and or partial and may or may not result in a minor's Family Courts' Jurisdiction Over Abused and having the right to consent to health services. Neglected Minors About half of the States have enacted statutes that In all States, juvenile and family courts have provide for court-ordered emancipation of minors or jurisdiction over minors of all ages who have been specify that certain designated acts by a minor's abused or neglected. Exercising this jurisdiction, parents, a minor, or both constitute emancipation. juvenile and family courts have traditionally had the Some of these statutes explicitly state that emancipa- power to intervene to secure health services for tion under these statutes removes the disabilities of minors whose parents refuse to consent to the minority, including the requirement of parental provision of services if the parents' refusal is consent to health services. Thus, minors emanci- deemed medical neglect. The basis for judicial pated under these statutes have the right to consent intervention under State juvenile and family court to health services. acts in such instances is the state's parens patriae power. In many instances where medical neglect is A substantial number of States have enacted alleged, the parents' refusal to consent to care is statutes that authorize minors who have attained based on religious convictions. Judicial intervention varying degrees of independence to consent to typically occurs only when a minor's life is or will health services but that do not use the term "emanci- be threatened because of lack of care. pation" or "emancipated" minors. Over half of the States have "independent minor" statutes that allow Exceptions Related to the Status and minors who are parents to consent to health care for Characteristics of Individual Minors themselves and/or their children; about half of the States have statutes that allow married minors to Two major types of exceptions to the parental consent to health care; and some States have statutes consent requirement are related to the status and that allow independent minors in other categories characteristics of individual minors: (e.g., minors living apart from their parents and exceptions for "emancipated" minors and managing their own financial affairs, minors in the "independent" minors, and military, minors who are high school graduates) to exceptions for "mature" minors. consent to health services. Exceptions for "Emancipated" and "Inde- Emancipated minor and independent minor ex- pendent" Minors-Emancipation is a somewhat ceptions to the parental consent requirement affect murky and confused area of the law, 11 but generally minors who have achieved complete or substantial speaking, "emancipated minors" are minors who independence from their parents, so they primarily have been legally freed from the control and affect adolescent minors. The focus of these excep- authority of their parents. Under the common law tions is the minor's independence, not the minor's doctrine of emancipation, courts-without explicit capacity to make health care decisions. These For discussions of the origins and development of emancipation, see H.H. Clark, The Law of Domestic Relations in the United States (27); F. Cady, "Emancipation of Minors" (24); and S. Katz, W. Schroeder, and L Sidman, "Emancipating Our Children-Coming of Age in Legal America" (50). Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-127 exceptions seem to reflect legislative judgments that requirement probably most often applies to minors a minor who is not part of a functioning family, or in middle and late adolescence. whose parents exercise little or no control over him : her, is in a better position to make health care Exceptions for Health Emergencies decisions than the minor's parents. In health emergencies, medical or surgical care Exceptions for "Mature" Minors-The "ma- may be furnished to minors without parental con- ture minor" exception to the parental consent sent. The emergency exception to the parental requirement has been enunciated primarily by courts consent requirement was originally enunciated by rather than by State legislatures. This exception was the courts. More than half of the States now have recognized by State courts beginning in the early statutes that codify the exception. Some of the State 1900s. According to one authority, the factors statutes simply authorize emergency care of a minor supporting a determination of a minor's maturity for without parental consent; others state that a physi- purposes of health care decisionmaking in these cian or other health professional who treats a minor decisions are as follows: in an emergency without parental consent is relieved from liability; and still others provide that a minor (1) the treatment is undertaken for the benefit of may consent to emergency care. a minor rather than a third party; (2) the particular minor is near the age of majority; (3) the minor is Exceptions for Specific Types of Health Services considered to have sufficient mental capacity to understand fully the nature and importance of Exceptions to the parental consent requirement medical steps proposed; (4) the procedures are for specific health problems or specific types of characterized as less than "major," not "serious" or services fall into three major categories: not overly "complex" (75). exceptions for health services related to sexual Recently, the mature minor doctrine has been activities, applied by the U.S. Supreme Court in decisions exceptions for health services related to drug dealing with the right of a minor to family planning and alcohol abuse, and ervices and abortion services (see discussion below). exceptions for mental health services. Only a few States have mature minor statutes. Three Exceptions for Health Services Related to States (Arkansas, Mississippi, and New Hamp- Sexual Activities-Exceptions to the parental con- shire¹²) have emacted statutes that explicitly author- sent requirement for health services related to sexual ize mature minors to consent to health services, and activities are of three general types: 1) exceptions for two States (Idaho and Nevada¹³) have enacted health services related to venereal, 14 sexually trans- statutes that are somewhat ambiguous but could be mitted, and infectious diseases and acquired immu- construed to constitute mature minor consent stat- nodeficiency syndrome (AIDS); 2) exceptions for utes. family planning services and abortion services; and 3) exceptions for pregnancy-related health serv- The mature minor exception to the parental ices.¹⁵ consent requirement is based on a rejection of the presumption of minors' incompetency and the un- Exceptions for Health Services Related to Vene- derlying assumption that minors as a class lack real, Sexually Transmitted, and Infectious Diseases decisionmaking capacity; this exception allows for and AIDS-Almost all States have enacted legisla- individualized determinations of minors' actual tion that specifically allows minors to consent to or decisionmaking capacity. Because it pertains to to receive services for a venereal or sexually mature minors, this exception to the parental consent transmitted disease without parental consent. More 12ARK. CODE ANN. 4 20-9-602(7) (1987); MISS. CODE ANN. I 41-41-3(h) (Supp. 1988); N.H. REV. STAT ANN. s 318-B:12a (1984). "DAHO CODE $ 39-4302 (1985); NEV. REV. STAT I 129.030(2) (1987). But see NEV. REV. STAT 4 129.030(1) (1987). "In common usage, the term "venereal disease" has been replaced by "sexually transmitted disease" (see ch. 9, "AIDS and Other Sexually Transmitted Diseases: Prevention and Services," in Vol. IL However, because some State statutes use the older term venereal disease, it is included here. 15The effectiveness of services related to adolescents' sexual behavior-e.g., services for the prevention and treatment of AIDS and other sexually transmitted diseases, family planning services, and pregnancy-related services-is discussed in Vol. II in ch. 9, "AIDS and Other Sexually Transmitted Diseases: Prevention and Services," and ch. 10, "Pregnancy and Parenting: Prevention and Services." III-128 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services than two-thirds of the States have enacted legislation In the landmark 1965 case Griswold V. Connecti- that specifically allows minors to obtain without cut [381 U.S. 479 (1965)] and in Eisenstadt V. Baird parental consent health services for "venereal dis- [405 U.S. 438 (1972)], the U.S. Supreme Court held ease"; about one-quarter of the States have a statute that an individual has a constitutionally protected that allows services without parental consent for "right to privacy" under the 14th amendment "sexually transmitted disease." A few States have encompassing decisions with respect to the use of a statute that allows minors is obtain services contraceptives.¹⁷ In the 1977 case Carey V. Popula- without parental consent for "infectious, conta- tion Services International [431 U.S. 678 (1977)], gious, communicable and reportable diseases" (or the U.S. Supreme Court established that minors as some variant thereof). None of the State statutes just well as adults have a constitutionally protected right mentioned expressly covers testing for infection to privacy with respect to the use of contraceptives.¹⁸ with human immunodeficiency virus (HIV), the A little under half of the States have statutes virus that causes AIDS, but some of them may cover providing that minors may obtain without parental or could be interpreted to cover HIV testing. A few consent what are variously described as contracep- States have statutes that expressly authorize minors tives, birth control services, or services for the to consent to or to receive HIV testing without prevention of pregnancy. Some of these statutes parental consent. impose restrictions on minors' obtaining these Most of the State statutes just mentioned allow services without parental consent (e.g., that the minors of any age to consent to services or to receive minor be of a certain minimum age, be referred from services for the diseases specified without parental a designated source, possess a certain maturity and consent, although others specify that minors must be intelligence, or be likely to suffer detrimental health 12 or 14 to consent to these services. The fact that consequences if the services are not provided). these statutes impose either no age limit or a very Many of them explicitly exclude or have been or low age limit for minors to consent to or to receive could be interpreted as excluding abortion from the services for these diseases without parental consent services that minors may obtain. appears to stem from a legislative recognition that In the landmark 1973 decision Roe V. Wade [410 society has a critical interest in facilitating and U.S. 113 (1973)], the U.S. Supreme Court held that encouraging access to health services to reduce the the constitutional right to privacy encompassed a spread of disease among its citizens. woman's decision about whether to have an abortion Exceptions for Family Planning Services¹⁶ and and invalidated State criminal statutes prohibiting Abortion Services-Restrictions on access to family nontherapeutic abortions at any stage of pregnancy. planning services and abortion services by adoles- At the same time, however, the Court ruled that a cents are governed by Federal constitutional law as State did have legitimate interests (e.g., in safe- interpreted by the U.S. Supreme Court and the lower guarding maternal health, in maintaining proper Federal courts, and the Supreme Court is the final medical standards, and in protecting human life) that arbiter of what is constitutionally permissible and could justify State regulation of the performance of abortions.¹⁹ impermissible when it comes to State-imposed restrictions-including parental consent and notifi- Since 1972, the Supreme Court has issued several cation requirements-on the provision of family decisions that have extended to minors at least some planning services and abortion services to minors. constitutional protections with respect to the right to 16Family planning services are contraceptives and other birth control services, with the exceptions of sterilization and abortion. 17In Griswold V. Connecticut [381 U.S. 479 (1965)], the U.S. Supreme Court held that State regulation of use of contraceptives by married persons invaded "the zone of privacy created by several constitutional guarantees" and struck down as unconstitutional a State statute prohibiting the use of contraceptives by married persons. In Eisenstadt V. Baird [405 U.S. 438 (1972)], the Court held that unmarried as well as married persons had a right to privacy with respect to contraceptive use. "In Carey V. Population Services International [431 U.S. 678 (1977)). the Supreme Court specifically held unconstitutional a State statute prohibiting the sale or distribution of contraceptives to minors. The Court indicated that "State restrictions inhibiting privacy rights are valid only if they serve any significant State interest that is not present in the case of an adult" "The Supreme Court ruled in Roe V. Wade that during the first trimester of pregnancy, a State may require only that the abortion be performed by a licensed physician; that after the first trimester, a State may "regulate the abortion procedure in ways that are reasonably related to maternal health:" and that once the fetus is "viable," a State may "regulate, even proscribe, abortion except where it is necessary in appropriate medical judgment, for the preservation of life or health of the mother" [410 U.S. at 164-65]. Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-129 decision and related decisions, about one-quarter of the States have enacted statutes requiring parental consent to abortion for minors. Some of these State statutes have been invalidated or are currently being challenged on Federal constitutional grounds, how- ever, so not all of the statutes are currently being enforced. It is important to emphasize that Federal constitu- tional law concerning the permissible scope of State regulation of abortion as interpreted by the U.S. Supreme Court is in flux. The Supreme Court's decision in the 1989 case Webster V. Reproductive Health Services [109 S. Ct. 3040 (1989)] appears to give the States greater leeway in restricting abor- tions and at the same time casts doubt on the future of Roe V. Wade and other Supreme Court decisions dealing with abortion. To the extent that Webster and future rulings increase States' ability to restrict abortion generally, they may reduce minors' access to abortion-even though the decisions do not directly address the question of parental consent. Exceptions for Pregnancy-Related Health Services- Over half of the States have statutes specifically Photo credit: U.S. Congress, Office of Technology Assessment authorizing minors to consent to pregnancy-related Laws related to the allocation of authority for decisions health services (e.g., testing to determine pregnancy, about the provision of health services to minors have prenatal care, and delivery services). Since these historically been the province of State legislatures, State consent statutes are directed at pregnant minors, they courts, and State administrative agencies, but the U.S. are in effect adolescent consent statutes. Supreme Court decides whether State laws adhere to the requirements of the U.S. Constitution. Exceptions for Health Services Related to Drug have an abortion. 20 The U.S. Supreme Court has not and/or Alcohol Abuse²¹-All but five States (Alaska, held a parental consent requirement for a minor's Arkansas, Oregon, Utah, and Wyoming) and the abortion to be unconstitutional per se. It has ruled, District of Columbia have statutes specifically however, that a minor's parents cannot be given an authorizing minors to consent to drug- and/or alcohol-related health services or to receive such absolute veto of a minor's decision to undergo an services without parental consent. Two-thirds of the abortion; any parental consent requirement for a States have statutes covering health services related minor's abortion must be coupled with the availabil- to both drug and alcohol abuse and dependency; ity of a "judicial bypass" procedure, under which a other States have statutes covering health services minor can secure court approval for an abortion if related to drug abuse or alcohol abuse but not both. she can demonstrate to the court that she is mature The majority of State statutes that allow minors to enough to make the abortion decision or that the obtain treatment for drug and alcohol abuse without abortion would be in her best interests. The Court parental consent do not impose minimum age has also indicated that the judicial bypass procedure requirements, although some of them pertain only to must ensure a confidential and expeditious proceed- minors who have reached a designated age-ranging ing. In the wake of the Supreme Court's Roe V. Wade from 12 to 16 years of age. 20Notable Supreme Court decisions dealing with parental consent to a minor's abortion include Planned Parenthood of Missouri V. Danforth [428 U.S. 52 (1976)], In Bellotti V. Baird (Bellotti II) [443 U.S. 622 (1979)], City of Akron V. Akron Center for Reproductive Health, Inc. [462 U.S. 6(1973)], and Planned Parenthood Association V. Ashcroft [462 U.S. 476 (1983)]. 21For a discussion of health services related to drug and alcohol abuse, see ch. 12, "Alcohol, Tobacco, and Drug Abuse: Prevention and Services," in Vol. II. III-130 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services State statutes that create an exception to the call for an inquiry by a neutral fact finder to parental consent requirement with respect to serv- determine whether the statutory criteria for admis- ices for drug or alcohol abuse would appear to sion were met. About two-thirds of the States now represent an acknowledgment on the part of State have statutes that allow parents to make a voluntary legislatures of the seriousness of drug and alcohol commitment to a mental health facility of a minor abuse problems among adolescent minors. They child. These statutes vary substantially in the safe- would also appear to be the product of a concern on guards they provide against inappropriate use of the part of State legislatures that minors may not hospitalization or institutionalization to manage obtain care related to such abuse if they have to "troublesome" minor children who do not have secure parental consent for such care, because severe mental health problems.² According to one "communications" between parents and minors analysis, "In general, minors are significantly regarding alcohol or drug abuse may "be strained or less able than are adults to resist mental hospitaliza- nonexistent" (81). tion sought for them by others" (85). Exceptions for Mental Health Services"-A About half of the States have statutes 1 little under half of the States have statutes that allow authorize minors to apply for admission as an some minors to obtain outpatient mental health inpatient to a mental institution or facility without services without parental consent. These statutes parental consent. Most of these statutes impose typically impose age restrictions and pertain only to minimum age limits, the most common being 16 adolescent minors. Underlying these statutes ap- years of age or older. Finally, a few States have pears to be a legislative realization that a parental statutes that require both the minor's consent and a consent requirement might deter some adolescent parent's consent for inpatient mental health services. minors who have mental health problems from seeking needed treatment because of a reluctance to reveal such problems to their parents. Confidentiality and Parental Notification Inpatient mental health services for minors pre- Requirements sent special problems in the area of consent. The involuntary commitment of a person to a mental It has long been accepted that the confidentiality institution or facility results in the deprivation of that of the relationship between a physician and patient person's liberty, so certain safeguards are in place as well as of the relationship between other types of (e.g., substantive criteria for commitment and proce- health care providers and their patients or clients, is dures pertaining to due process) to ensure that such essential to a patient's trust in a health care provider commitment is necessary. For voluntary commit- and to a patient's willingness to supply information ment, however, such safeguards are not mandated, candidly (68). Courts and legislatures have estab- and as a concomitant of the parental consent lished a physician-patient privilege to protect the requirement for the provision of health services to confidentiality of communications between physi- minors, parents have sometimes been allowed to cians and their patients and have established similar make a "voluntary commitment" of a minor child privileges to ensure the confidentiality of communi- to a mental institution or facility, regardless of the cations between other types of health care providers minor's desire or need for services. and their patients or clients (29). Furthermore, there is a developing case law imposing liability on In Parham V. J.R. [442 U.S. 584 (1979)], the U.S. physicians for unauthorized disclosure of confiden- Supreme Court rejected the contention that an tial information about their patients (8) (although all adversary hearing was required to decide whether a health care professionals are required by law to minor may be committed by his or her parents in disclose information in situations where there is a order to protect the minor, but held that the risk of strong societal interest in disclosure-e.g., in the error in the parental decision to commit a minor to reporting of cases of suspected child abuse to the a mental health facility was sufficiently great as to public child welfare authorities (47)). 22Mental health services for adolescents are reviewed in ch. 11, "Mental Health Problems: Prevention and Services," in VoL II. 23Some people are concerned that the rising admission to psychiatric units of private hospitals are indicative of widespread misuse of commitment to control "troublesome" minors (85). See ch. 11, "Mental Health Problems: Prevention and Services," in Vol. II, for further discussion. Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-131 By and large, the confidentiality of the relation- ship between health service providers and minors and the disclosure of confidential information by health service providers to the parents of minors or other third parties are not addressed in case or statutory law. Requirements that parents be notified of a minor's decision to obtain health services or of the minor's actual receipt of health services, how- ever, have in fact become a "legal" issue. In carving out exceptions to the requirement for parental consent to the provision of health services to minors, courts and legislatures have sometimes-though not always-replaced the parental consent requirement with a parental notification requirement. The justifications for requiring that the parents of minors be notified of the decisions of their minor children to obtain health services are essentially the Photo credit: Los Angeles Free Clinic, Project Able same as-or at least very similar to-the justifica- Courts and legislatures seem to regard parental tions for requiring that parents consent to health notification requirements as less burdensome for adolescents than parental consent requirements, but It is services for minor children. One justification for not dear that adolescents in conflict with their parents parental notification requirements is to ensure that make this distinction. parents play an appropriate "guiding role" in counseling their minor children about health care requirement in health emergencies is for the statutes decisions-a role assumed to be needed given the to have no provisions concerning parental notifica- presumed incompetency of minors to make health tion; only a handful of these statutes have some sort care decisions based upon minors' assumed lack of of parental notification provisions. decisionmaking capacity. Another major justifica- tion is to bolster parental direction and control of their minor children and thereby to maintain the Parental Notification Requirements for Specific family structure. Types of Health Services Parental Notification Requirements for Health Many parental notification provisions appear in Services Provided to "Emancipated," State statutes that create exceptions to parental "Independent," or "Mature" Minors consent requirements by allowing minors to consent to health services related to sexual activities, health The prevailing pattern in the many State statutes services for drug and alcohol abuse, or mental health that authorize "emancipated minors" to obtain services (see discussion of these exceptions above). health services without parental consent is for these Although the legislatures and courts appear to regard statutes to be silent concerning parental notification; the requirement of parental consent as more onerous only a few of these statutes contain various kinds of from the standpoint of an adolescent than the parental notification provisions. The same prevail- requirement of parental notification, it is not clear ing pattern is found in States' "independent minor" that adolescents distinguish between parental con- statutes and "mature minor" statutes. sent and notification requirements. According to Parental Notification Requirements for one observer, it is "immaterial to the adolescent just Emergency Health Services when parents learn (before or after the fact of treatment) or how parents learn (by mandatory The prevailing pattern in the many State statutes consent, by notification, or by inadvertent disclosure that create an exception to the parental consent through parental reading of the health record)" (43). 24See, for example, H.L. V. Matheson, 450 U.S. 398 (Burger, J.) (Powell, J. concerring); HL V. Matheson 420-25 (Stevens, J. concurring); and B.D. Hofman, "The Squeal Rule: Statutory Resolution and Constitutional Implications-Burdening the Minor's Right of Privacy" (44). 25See, for example, M. Boumil, "Dispensing Birth Control in Public Schools: Do Parents Have a Right To Know?" (23). III-132 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services Notification Requirements for Health Services planning services without parental consent have Related to Sexual Activities-Parental notification provisions pertaining to parental notification of the requirements related to health services involving minor's application for receipt of such services, and sexual activities pertain to the three major categories nearly all of these provisions allow but do not of services mentioned earlier: 1) health services compel parental notification. As of mid-1990, the related to venereal, sexually transmitted, and infec- U.S. Supreme Court had not directly addressed the tious diseases and acquired immunodeficiency syn- constitutionality of parental notification require- drome (AIDS); 2) family planning services and ments that involve parents in a minor's decision abortion services; and 3) pregnancy-related health about obtaining family planning services. services. In 1983, the U.S. Department of Health and Notification Requirements for Health Services for Human Services unsuccessfully attempted to prom- Venereal, Sexually Transmitted, and Infectious Dis- ulgate Federal regulations requiring that family eases and AIDS-The many State statutes that planning clinics receiving Federal funds under Title authorize minors to obtain testing and treatment for X of the Public Health Service Act²⁶ notify parents venereal, sexually transmitted, or infectious diseases of unemancipated minor children when contracep- without parental consent generally do not require tives were prescribed.² These regulations-issued parental notification. A few States have statutes that pursuant to a congressional amendment to the specifically state that services for these diseases may authorizing statute for the Title X family planning be furnished to minors without parental notification; program that provided that "[t]o the extent practical, nearly one-third of the States have statutes that give entities which receive grants or contracts under this health professionals general discretion to notify subsection shall encourage family participation in parents or discretion to notify parents under certain projects assisted under this section" [42 U.S.C. § specified circumstances; nearly two-thirds of the 300(a) (1982)]-aroused a great deal of controversy States have statutes that contain no parental notifica- and were the subject of litigation in the Federal tion provisions; and one State has a statute that courts. Ultimately, two Federal courts enjoined the mandates parental notification under limited condi- Department from implementing the regulations.² tions. Although the issue of parental notification has The relatively small number of State statutes that also generated a great deal of attention in relation to permit minors to be tested and treated without minors' access to abortions, the U.S. Supreme Court parental consent for infection with HIV (the virus has not dealt extensively with parental notification that causes AIDS) generally do not require parental in cases involving abortion services for minors. In notification. A few States have statutes with provi- the 1981 case H.L. V. Matheson [450 U.S. 398 sions giving health professionals general discretion (1981)], however, the Supreme Court sustained the to notify or discretion to notify parents under constitutionality of a State statute requiring a specified circumstances; one State has a statute that physician to notify "if possible" the parent of a contains no parental notification provision; and one minor upon whom an abortion is to be performed as State has a statute requiring confidentiality unless a applied to a minor living with and dependent on her minor's HIV test results are positive, in which case parents; the Court left open the question of whether parental notification is required. the statute would be constitutional as applied to emancipated or mature minors. Notification Requirements for Family Planning Services and Abortion Services-Only a few of the In Hodgson V. Minnesota S.Ct. 2926 (1990)], State statutes that permit minors to consent to family handed down in June 1990, the Supreme Court 26For further discussion of the Title X family planning program, see ch. 10, "Pregnancy and Parenting: Prevention and Services," in Vol. II ch. 19, "The Role of Federal Agencies in Adolescent Health," in this volume. 27The regulation provided that 10 days after prescribing a contraceptive drug or device for a minor, the family planning clinic must notify the r's parent [45 CFR 1 59.5(a)(12)(i)(A)]. "The Court of Appeals for the Second Circuit held that the 1981 amendment to Title X did not authorize the regulation mandating parental notification [New York V. Heckler, 719 F.2d 1191 (2d Cir. 1983)]. The Court found that Congress did not intend to require parental notification but I 1 to encourage parental involvement. The Court of Appeals for the District of Columbia held that the regulation requiring parental notification was inconsistent with congressional intent with respect to Title X [Planned Parenthood Federation of America V. Heckler, 712 F2d 650 (D.C. Cir. 1983)]. Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-133 struck down as unconstitutional a section of a many State statutes that allow minors to obtain Minnesota statute requiring that both parents of an health services for drug and/or alcohol abuse with- mancipated minor be notified before she under- out parental consent exhibit considerable variation is an abortion, except under very limited circum- when it comes to parental notification provisions- stances. However, the Court upheld the constitution- and this variation makes generalizations difficult. ality of a section of the statute providing for the same Some of these State statutes are silent as to parental two-parent notification requirement with the addi- notification; some of the statutes require that a tion of a "judicial bypass" procedure. In a contem- minor's drug or alcohol abuse treatment be kept poraneous decision, Ohio V. Akron Center for confidential under specified circumstances; some of Reproductive Health [110 S.Ct. 2972 (1990)], the the statutes leave parental notification up to the Court upheld the constitutionality of an Ohio statute discretion of the health professional or to the making it a crime for a physician or other person to discretion of the health professional under certain perform an abortion on an unmarried, unemanci- specified circumstances; a few State statutes require pated minor unless: 1) there was timely notice to one parental notification attempts; and a few of the of the minor's parents, her guardian, or custodian; 2) statutes require parental notification or require the minor's parents, guardian, or custodian had parental notification under certain specified circum- consented to the abortion; 3) a juvenile court had stances. issued an order authorizing the minor to consent to the abortion, thereby bypassing parental notification In 1987, the U.S. Department of Health and for consent; or 4) judicial inaction under certain Human Services issued a final rule for federally circumstances constitutes constructive authorization funded alcohol and drug abuse programs that for the minor to consent. prohibits such programs from notifying a minor's parent of the minor's application for treatment A little under one-quarter of the States have without the minor's written consent to notification in statutes requiring parental notification of a minor's States where State law permits minors to obtain abortion decision. In the wake of the Webster ruling, alcohol or drug abuse treatment without parental re has been increased debate as to whether consent [42 CFR, Part 2 $ 2.14 (1989)]. This ental notification of abortions involving minors prohibition covers, among other things, the disclo- should be required,29 and the Supreme Court's sure to a minor's parent of patient identifying decisions as to the constitutionality of the two State information for the purpose of obtaining financial statutes just mentioned may furnish an impetus for reimbursement; however, "these regulations do not additional State legislative activity aimed at requir- prohibit a program from refusing to provide alcohol ing parental notification in the case of a minor's or drug abuse treatment until a minor consents to the decision to have an abortion. disclosure necessary to obtain reimbursement. [42 CFR, Part 2 § 2.14 (1989)]. In States where State Notification Requirements for Pregnancy- law requires parental consent to alcohol or drug Related Health Services-The many State statutes abuse treatment, the rule states that the fact of a that authorize minors to obtain pregnancy-related minor's application for treatment may be communi- health services without parental consent generally cated to the minor's parent only if: a) the minor has do not require parental notification. One State has a given written consent; or b) the minor "lacks the statute that explicitly provides that prenatal care may capacity for rational choice" regarding such consent be furnished without parental notification; some- (e.g., because of extreme youth or physical condi- what under one-third of the States have statutes that tion) and the minor's "situation poses a substantial have no provisions regarding parental notification; threat to the physical well-being of the minor or and about one-fourth of the States have statutes that other person" that may be alleviated by parental provide for parental notification at the discretion of notification [42 CFR, Part 2 § 2.14 (1989)]. health professionals. Notification Requirements for Mental Health Notification Requirements for Health Services Services-The many State statutes under which Related to Drug and/or Alcohol Abuse-The minors can consent to mental health services or 167 29See C. Collins, "Abortion Focus Shifting to Teenagers" (30); New York Times, "Kansas Is Urged To Curb Abortion" (70); New York Times, "Virginia Senators Stall Bill To Curb Abortion" (71). il-134 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services Several factors affect the impact of legally I dated parental consent and notification requirements on minors' access to and utilization of health services. One factor is whether-and if so, to what degree-there are actual or potential conflicts between minors, the parents of minors, and health professionals in the making of health care decisions involving the minor. As noted earlier, laws requiring parental consent and notification do not become critical, or even relevant, unless there are such conflicts. In some cases, the way a health profes- sional presents information to a minor and the minor's parents and what kind of relationship he or Photo credit: Joe M. Sanders, American Academy of Pediatrics she has with them may have a decisive influence on Laws requiring parental consent and notification in the the nature and extent of such conflict. If a health provision of health services to adolescents do not affect adolescents' access to services unless there are professional has knowledge, skills, and experience conflicts or potential conflicts between adolescents, regarding the management of potential conflicts, their parents, and health care professionals. some conflicts may well be avoided (43,77). receive mental health services without parental On the other hand, some conflicts between consent vary in terms of parental notification re- quirements. The majority of State statutes that allow minors, their parents, and health professionals over minors to consent to outpatient mental health health care decisions affecting the minor are proba- services are silent as to parental notification, and the bly unavoidable. There is some evidence that actual remainder of statutes specify that mental health or potential conflicts do occur in a signifi treatment should be confidential, specify that notifi- number of cases involving decisions about the cation is at the discretion of health professionals, or provision of family planning and abortion services to adolescent minors. 30 What is not known, however, mandate parental notification under designated lim- ited conditions. The majority of State statutes that is whether-and if so, to what degree-actual or allow minors to consent to inpatiens mental health potential conflicts occur in cases involving decisions about other health services that minors, particularly services similarly do not have parental notification provisions, and the remainder provide for parental adolescent minors, may want or need. notification at the discretion of health professionals, Another factor that affects the impact of legally or provide for notification under certain circum- mandated parental consent or notification require- stances. Perhaps not surprisingly, inpatient mental health statutes are more likely than outpatient ments for the delivery of health services to minors is whether-and if so, to what degree-health care statutes to require or permit parental notification. providers comply with these requirements in provid- The Impact of Law Requiring Parental ing health services to minors. Laws might be Consent and Notification on Minors' expected to evoke compliance, carrying with them Access to Health Services as they do sanctions for violations and constituting as they do a societal declaration that certain conduct What is the impact of law requiring parental is right or wrong. Clearly, however, laws differ in consent to health services for minors or requiring their effectiveness. Noncompliance with parental parental notification of the provision (or intended consent or notification laws on the part of health provision) of health services to minors? More professionals might occur because the professionals specifically, what is the impact of parental consent misunderstand or do not know the legal require- and notification requirements on minors' access to ments. Noncompliance might also occur because the health services and on minors' utilization of health legal requirements, at least as applied to particular services? factual situations, are at odds with the ethical 30See, for example, Brief for Petitioners at 16-23 Hodgson V. Minnesota [853 F.2d 1452 (8th Cir. 1988) (en banc), appeal filed (U.S. Feb. 3, 1 (No. 88-11257), 110 S.Ct. 400 (1989)]. Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-135 standards as expressed in statements by professional organizations of their profession (see box 17-A) or with their personal ethical values and norms. OTA is unaware of any empirical studies and data concerning compliance and noncompliance with legally mandated parental consent or notification requirements that would permit valid conclusions about the extent of compliance and noncompliance among health service providers. To the extent that legally mandated parental consent and notification requirements are adhered to by health professionals, the issue arises of whether- and if so, to what degree-such requirements may operate as barriers to adolescents' access to needed health services. As noted earlier, it is not clear that adolescents distinguish between parental consent and notification requirements. With parental consent and notification requirements in place, one possible scenario is that a substantial number of parents of adolescents would frequently and strongly object to the provision to their children of at least some health services-for example, family planning or other services associated with sexual activity, services for substance abuse, and services for mental health problems. A possibly related scenario is that a large number of adolescent minors would be unwilling to reveal to their parents their need for health services— or at least their need for certain services associated with sexual activity, drug or alcohol abuse, or mental Photo credit: March of Dimes Birth Defects Foundation health problems-and therefore would delay or be deterred from seeking these services entirely. in the case of family planning and abortion services, studies have found that parental consent and Several empirical studies concerning the impact notification requirements pose a significant barrier of parental consent and notification requirements to adolescents' access to and utilization of services. indicate that such requirements-at least in the case Quite probably, such requirements also pose similar barriers to adolescents' access to other types of of family planning and abortion services-do create services (e.g., mental health treatment, drug abuse barriers to adolescents' access to and utilization of treatment, alcohol abuse treatment). services (21,22,25,26,28,78,79,87,88). What cannot be said with certainty, however, is whether the health services to a minor, health care providers- findings of these studies of the impact of parental both institutional providers (e.g., hospitals, clinics, consent and notification requirements on adoles- and health maintenance organizations) and individ- cents' access to family planning and abortion ual providers-may as a matter of policy or practice services can be extrapolated to other types of health refuse to provide services to minors without parental services. consent and/or notification. One of the main reasons One other point related to evaluating the impact of that health care providers may refuse to provide parental consent and notification requirements is services without parental consent is probably finan- deserving of mention. Even if the laws in a given cial-i.e., providers may be concerned that a minor jurisdiction do not require that a parent consent to will be unable to pay for services provided and that health services for a minor and/or that the parent be the minor' s parents will not pay for services because notified of the provision or intended provision of they have not consented to or been notified of the III-136 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services Box 17-A-Professional Ethical Standards Relevant to Consent and Confidentiality A central principle of medical ethics is that "a physician may not reveal the confidences entrusted to him in the course of medical attendance unless he is required to do so by law or unless it becomes necessary in order to protect the welfare of the individual of the community" (9). Many organizations of physicians, nurses, psychologists, social workers, and other professionals engaged in providing health services to adolescents have issued or approved professional ethical standards that similarly stress the importance of maintaining confidentiality between the health professional and the patient or client being served but at the same time acknowledge that legal obligations and the welfare of the individual and the community may take precedence over confidentiality (2-4,6,7,9-16,65-67). Few of the ethical standards issued or approved by organizations of health professionals speak directly to issues of consent and confidentiality as they arise in the provision of health care to adolescents. A conference sponsored by the American Academy of Pediatrics in 1981 sought to address that problem. Conference participants from a variety of disciplines agreed that the following principles should govern consent and confidentiality in adolescent health care: With respect to adolescence, there exists an enduring need to balance delicately the relative rights and needs of minors to confidential health services with the relative rights and responsibilities of parents toward their offspring. Adolescents should have access to needed health services. Adolescents, unless fairly adjudged incompetent, should participate in decisions pertaining to their health. The concept of "mature minor" and the capacity of that individual to consent is recognized. Even when adolescents seek health care on their own consent, they should be encouraged to involve their parents, unless there is compelling reason not to do so. (In that case, often an alternative adult adviser/relative is appropriate.) Chronologic age is not a suitable yardstick to determine an adolescent's maturity and capacity to give informed consent. Development criteria are far more telling, as applied on an individual basis. Adolescents generally should be entitled to confidentiality in their own health care, and that presumption should be overridden only by good reason. Parental notification should be encouraged but not be made mandatory in the provision of adolescent health care, especially inasmuch as the absence of guaranteed confidentiality could deter many young persons from seeking and receiving necessary services. Adolescents should have the same right of access to their health care records as do adults unless there is compelling reason to the contrary. Disclosure of health data to third parties, such as health insurers, should only be with parents' informed consent and/or that of adolescents if it pertains to care they have received on their own. As a general rule, adolescents should retain the right to consent to such disclosure with or without parental participation, even if the adolescent did not originally consent to the health care, unless there is a compelling reason not to. Health providers and third-party repositories periodically should review data collected during an individual's minority to reassess its relevance, expunging data no longer needed. To protect adolescents, they should be provided with some record as to where their health information was sent, when it was sent, and for what purpose (5). In 989 the American College of Obstetricians and Gynecologists (ACOG) issued a policy statement setting forth the most extensive ethical standards pertaining to consent and confidentiality in adolescent health care to date. The which has since been approved by the American Academy of Family Physicians, the American liatrics, the NAACOG (the Organization for Obstetric, Gynecologic, and Neonatal Nurses), and the Nat Association, provides as follows: fessionals have an ethical obligation to provide the best possible care and counseling to respond 8 the de of their adolescent patients. this oligation includes every reasonable effort to encourage the adolescent to involve parents, wh in many circumstances, increase the potential for dealing with the adolescent's problems on the basis. 3 Paren frequently in a patient relationship with the same providers as their children or have been exercising decisionmaking responsibility for their children with these providers. At the time providers Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-137 establish an independent relationship with adolescents as patients, the providers should make this new relationship clear to parents and adolescents with regard to the following elements: a. The adolescent will have an opportunity for examination and counseling apart from parents, and the same confidentiality will be preserved between the adolescent patient and the provider as between the parent/adult and the pic ider. b. The adolescent must understand under what circumstances (e.g., life-threatening emergency) the provider will abrogate this confidentiality. c. Parents should be encouraged to work out means to facilitate communication regarding appointments, payment, or other matters consistent with the understanding reached about confidentiality and parental support in this transitional period when the adolescent is moving toward self-responsibility for health care. 4. Providers, parents, and adolescents need to be aware of the nature and effect of laws and regulations in their jurisdictions that introduce further constraints on these relationships. Some of these laws and regulations are unduly restrictive and in need of revision as a matter of public policy. Ultimately, the health risks to the adolescents are so impelling that legal barriers and deference to parental involvement should not stand in the way of needed health care (7). The ACOG policy statement and American Academy of Pediatrics conference principles encourage parental involvement in adolescent health care decisions but do not endorse the current legal requirements of parental consent and notification. The support of health professionals serving adolescents for that statement and principles indicates that many of these professionals are-at least in theory-more willing than most courts or legislatures have been to grant adolescents autonomy in health care decisionmaking and to afford protection to the confidentiality of the relationship between a provider of health services and an adolescent patient or client. Furthermore, at least one empirical study suggests that health professionals are willing to support these ideas in practice (60). A question that remains is how helpful existing standards in the form of statements by professional organizations are in resolving the kinds of ethical problems that professionals encounter in providing health services to adolescents. The following situations, compiled by a national authority on adolescent medicine, are illustrative of potential conflicts between interests of the adolescent, the adolescent's parents, and the state (77): A 16-year-old boy is discovered to have a malignant bone tumor. Appropriate treatment requires amputation of his leg. His parents consent to the surgery but he refuses. He will accept all other forms of treatment but would "rather die with both legs than survive as a cripple!" Do you operate without the consent of the boy? Do you seek a court order against the wishes of the boy? A 17-year-old boy is admitted to the intensive care unit with multiple fractures disorientation. He was the driver of an automobile involved in a collision in which three passengers were killed. As part of the evaluation of his state of consciousness you determine that his blood alcohol level is well above the legal limits for intoxication. Do you share this information with his family in explanation for his confusion? Do you share this information with the authorities who are investigating this fatal ancident? A 16-year-old girl is brought to care by her mother who 18 concerned about her daughter's poor school performance and disruptive behavior. In your private interview with the girl, she confides that she is smoking marijuana a few nights each week. The girl feels that her current problems relate to the unrealistic expectations of her mother regarding performance and behavior. She insists that the confidentiality of her interview be respected and that the information about her drug use not be shared with her mother. Do you tell the mother anyway? What if the mother specifically asks, "Is my daughter drugs?" The mother requests that a portion of the urine sample collected for routine analysis be sent for drug testing. Do you accede to this request? A 15-year-old girl returns with her parents to discuss her recently diagnosed pregnancy. Her parents are certain that the only acceptable course action is to tesminate the prégnamcy,The girl is adamant in her refusal to consider an abortion. What you do? A 16-year-old girl is brought for evaluation by her mother because a of abdominal pain. Physical examination and laboratory evaluation reveal a raginal discharge secondary to gonorthea. The girl admits to multiple brief intimate relationships over the few months) that her mother would "kill her" if she found out. You know family and e mother is (bit of a tyrant with a quick temper. What do you tell the mother? Continued on next page -6 th WHEN broader measures o Journal of School Health May 1992, Vol. 62, No. 5 III-138 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services Box 17-A- Professional Ethical Standards Relevant to Consent and Confidentiality-Continued An 8-year-old homosexual male comes in and requests testing for AIDS. His affect is depressed and upon questioning he admits to frequent suicidal ideation and one prior attempt. He is certain "he would kill himself" if he finds out he has AIDS, but must know the results of his testing because not knowing is 'driving him crazy." Do you do HIV testing? You are caring for a 17-year-old intravenous drug abuser whom you know to be HIV positive. For the very first time he appears to be sincerely motivated to enter into a drug abuse treatment program. He asks that you complete the required preadmission history and examination form but insists that you make no mention of his HIV status. Do you fill out and sign the form omitting reference to his HIV status? A recently married 18-year-old with a past history of homosexual activity is found to be HIV positive. He refuses to inform his bride. He is certain she would leave him. Do you tell her? You are caring for a 17-year-old who has AIDS secondary to a transfusion. His 16-year-old girl friend is aware of the diagnosis, but they continue to have unprotected intercourse. She "doesn't care"; she "loves him." Do you inform her parents? Unfortunately, existing ethical standards by professional organizations would appear to give little concrete guidance and direction to adolescent health service providers in resolving many of these problems. Perhaps the limitation of professional standards in giving guidance in actual situations is inevitable given the sui generis nature of most ethical problems. It is very troublesome, however, given the complex dilemmas that the service providers often encounter in serving adolescents. provision of services. 31 Another reason may be of decisionmaking capacity; however, the legal providers' concern that the effectiveness of the presumption that minors are incompetent is not services provided will be reduced by lack of parental rebuttable by a factual showing of actual presence of involvement or belief that the effectiveness of the decisionmaking capacity in the absence of legisla- services provided will be enhanced by parental tively or judicially sanctioned rules permitting such involvement. a showing. Minors' Competency To Make The factual validity of assumptions that minors Health Care Decisions lack the requisite capacity to make health care decisions has been increasingly challenged. 32 Ac- As noted at the beginning of this chapter, individ- cordingly, the presumption that minors are incompe- uals traditionally have been treated as legally tent to make health care decisions has been increas- competent or incompetent for purposes of health ingly subject to criticism on the ground that it care decisionmaking on the basis of their age rather inequitably denies minors in middle or late adoles- than a determination of their actual capacity for cence-some of whom actually have the requisite decisionmaking. As a general rule, the law presumes decisionmaking capacity-the power to make their that adults are competent to consent to health care own determinations about obtaining health services and that minors are incompetent. The legal presump- (82). Since assumptions concerning minors' lack of tion that minors as a class are incompetent to consent health care decisionmaking capacity seem largely to to health services rests at least in part on the reflect the intuition of judges and legislators rather assumption that minors as a class lack the requisite than hard evidence, it is important to identify decisionmaking capacity. The legal presumption empirical research bearing upon the validity of these that adults are competent is rebuttable under some assumptions and to evaluate whether such research circumstances upon a factual showing of actual lack supports modification or elimination of the pre- 31If a parent has consented to health services for his or her minor child, the parent is usually financially liable for the services. If a parent has not consented to health services for the minor child, however, the parent is usually not financially liable unless the services are determined to be "necessary." If the parent is not financially liable, the health care provider may attempt to collect from the minor child, but collection may prove difficult because the minor may have the power to disaffirm the contract for services or may have insufficient financial resources to pay for the services. As noted at the beginning of this chapter, one of the rationales for the parental consent requirement seems to be to assure providers of the availability of a payment source for their services. 32See, for example, G. Melton, "Children's Consent: A Problem in Law and Social Science" (61). Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-139 sumption that minors are incompetent to make their undisclosed risk in order to make an informed own health care decisions. decision, the courts often speak in terms of the materiality of the risk: the doctor's duty is to disclose Empirical research bearing on the competency of all risks which are "material" The extent of this minors to make health care decisions was reviewed duty to disclose has traditionally been based upon a by OTA's contractors and is discussed below. professional medical standard-whether physicians Before turning to that research, however, it is customarily inform their patients about the type of necessary to examine two definitional issues: first, risk involved, or whether a reasonable physician what constitutes effective legal consent to health would make the disclosure in the circumstance. services; and second, what constitutes legal compe- Since the use of a professional standard paternalisti- tency to make such consent. cally leaves the right of choice to the medical community, in derogation of the patient's right of Ambiguities in Legal Definitions of self-determination, a number of recent cases have Consent and Competency defined the duty in terms of the patient's need to know the information-based on whether a reason- What Constitutes Effective Legal Consent able person in the patient's position would attach to Health Services significance to the information. In addition to proving the doctor's failure to As alluded to at the beginning of this chapter, the provide sufficient information, on whatever stand- tort law doctrine of informed consent requires ard, the plaintiff must also establish a causal link physicians and surgeons to obtain from their patients between the nondisclosure and his harm, by proving informed consent for medical treatment or surgery; that he would not have undergone the treatment had failure to obtain informed consent may give rise to he known of the risk of harm that in fact occurred. civil liability.³³ [Citations omitted] (53).34 The informed consent doctrine has been devel- Rationales for the informed consent doctrine are oped in judicial opinions and codified by legislation to promote the patient's autonomy and protect the and does not readily lend itself to a concise patient's right of self-determination (64), to protect summary. Nevertheless, one leading tort law author- patients against depersonalized authoritarian medi- ity has summarized the doctrine as follows: cal treatments, and to encourage rational decision- making (59). It is important to note that focus of the The informed consent doctrine is based on doctrine as it has been articulated and applied is on principles of individual autonomy, and specifically the duty of health professionals to disclose informa- on the premise that every person has the right to tion to an individual. The focus has not been on the determine what shall be done to his own body. Surgeons and other doctors are thus required to individual's actual understanding of the information provide their patients with sufficient information to disclosed. permit the patient himself to make an informed and What Constitutes Legal Competency intelligent decision on whether to submit to a To Make Health Care Decisions proposed course of treatment or surgical procedure. Such a disclosure should include the nature of the The legal concept of competency has a very long pertinent ailment or condition, the risks of the history and is central to existing laws governing proposed treatment or procedure, and the risks of any health care decisionmaking with respect to adoles- alternative methods of treatment, including the risks cents. On the one hand, as noted earlier, the of failing to undergo any treatment at all. Thus, although the procedure is skillfully performed, the well-established legal requirement that parents must doctor may nevertheless be liable for an adverse consent to the provision of health services for their consequence about which the patient was not ade- minor children is partially an outgrowth of the quately informed. presumption that minors are incompetent (which in In addressing the perplexing question of whether turn is based on assumptions of their lack of the patient needed to know about a particular decisionmaking capacity). To some extent, judicial BTO be legally effective, consent to health care services must be both "informed" and also be "voluntary." The concept of voluntariness is not well defined (17). 34For discussion of the development of the informed consent doctrine, see P.S. Appelbanm, C.W. Lidz, and A. Meisel, Informed Consent: Legal Theory and Clinical Practice (17); for a State-by-State analysis of the application of the informed consent doctrine, see A.J. Rosoff, Informed Consent: A Guide for Health Care Providers (73). III-140 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services and statutory parental notification requirements Recognizing the need to define with more speci- applied to minors are also derived from this pre- ficity a criterion for determining whether a person, sumption and assumption. On the other hand, including an older minor, is competent to make "mature minor" and some other exceptions to the health care decisions, the President's Commission parental consent requirement, as discussed lier in for the Study of Ethical Problems in Medicine and this chapter, represent a rejection of the presumption Biomedical and Behavioral Research noted 1 of minors' incompetence (and underlying assump- three general criteria have been used to determine if tions of their lack of decisionmaking capacity) as a patient lacks capacity to make health care deci- applied to some minors under certain circumstances. sions: the outcome of the decision, the status or Unfortunately, neither the courts nor the legisla- category of the patient, and the patient's functional tures in this country have furnished much guidance ability as a decisionmaker. as to the content and meaning of competency in the context of health care decisionmaking. The U.S. The outcome approach-which the Commission Supreme Court has most fully articulated its as- expressly rejects-bases a determination of incapac- sumptions concerning the minors' lack of health care ity primarily on the content of a patient's decision. decisionmaking capacity (which underlie the pre- Under this standard, a patient who makes a health sumption of minors' incompetency to make health care decision that reflects values not widely held or care decisions) in decisions dealing with minors' that rejects conventional wisdom about proper health rights to obtain contraceptives and abortions without care is found to be incapacitated. parental involvement and in decisions dealing with Using the status approach, certain categories of the civil commitment of minors by parents (see patients have traditionally been deemed incapable of discussion above). A thread that runs through these making treatment decisions without regard to their Supreme Court decisions is the Court's concern that actual capabilities. Some of these categories of pa- minor children do not possess the intelligence, tients-such as the unconscious-correspond closely maturity, and experience that their parents possess. with actual incapacity. But other patients who are Another thread that runs through these decisions is presumed to be incapacitated on the basis of their the Court's concern that minors are not capable of status may actually be capable of making particular making informed and voluntary decisions. The health care decisions. Many older children, for Court's specific concerns in this regard are that example, can make at least some health minors may not understand or appreciate the short-or decisions, mildly or moderately retarded individuals long-term consequences of their decisions, that they hold understandable preferences about health care, may be susceptible to interpersonal pressures in and the same may be true in varying degrees among making decisions, and that they may make unwise psychotic persons. decisions detrimental to their welfare. The third approach to the determination of in- capacity focuses on an individual's actual function- Courts-and, to a lesser extent, legislatures— ing in decisionmaking situations rather than on the have probably come closest to enunciating a stand- individual's status. This approach is particularly ard for determining the competency of minors to germane for children above a certain age variously make health care decisions in connection with described as from seven to mid-teens exceptions to parental consent requirements for The Commission recommends that determina- "mature" minors (see discussion above). The stand- tions of incapacity be guided largely by the 1 c- and for judging competency in these cases is tional approach, that individuals not in certain essentially whether the minor is capable of under- categories (such as under the age of 14, g y standing the nature and consequences of proposed retarded, or comatose) should be assumed to P B medical or surgical treatment and procedures. Un- decisionmaking capacity until they demonstrate fortunately, however, this standard for determining otherwise, and that incapacity should be found to a minor's competency provides little real assistance exist only when people lack the ability to for its application in particular cases.³⁵ decisions that promote their well-being in conform- 35See, for example, G.B. Melton, "Legal Regulation of Abortion, Unintended Effects" (62). Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-141 ity with their own previously expressed values and they involve health care decisionmaking; preferences. [Citations omitted] (72).36 they involve participants whose ages span or The failure of courts and legislatures to furnish overlap the range of 10 to 18 years; much guidance as to the content and meaning of they involve comparison groups with at least competency in terms of health care decisionmaking some subjects legally considered adults-i.e,, has had important implications for the strategies age 18 or over³⁷ (although no adult participants in the core studies were older than 25 and most adopted in empirical studies of the capacity of minors to make health care decisions. Because were 21 or younger); and courts have not provided operational definitions of they appear to be methodologically adequate. legal standards for minimally competent decision- In addition to the core group of studies, a few making, researchers have been unable to use an other studies that lack one or more of the features operational definition of competency corresponding just mentioned but nevertheless provide insight into to the legal definition. Thus, researchers seeking to decisionmaking by minors were reviewed (40,51,57, test the validity of the law's presumption that adults 58,76). Some of these other studies address decision- are competent and minors are incompetent to make making domains not addressed in the core group of health care decisions have had to resort to an studies (e.g., legal decisionmaking); and some of alternative strategy-namely, comparing decision- them deal with the effect on decisionmaking of a making by minors to decisionmaking by adults (i.e., variable or variables other than age (e.g., the individuals age 18 and over). Since adults are differential vulnerability of minors and adults to presumed by the law to be competent, adults' social influence of peers, family, or professionals). decisionmaking capabilities implicitly set the stand- ard against which the decisionmaking capabilities of minors are to be judged. If the decisionmaking of Findings of the Core Group of Empirical Studies minors and adults were found to be indistinguish- on the Age-Competence Relationship able, the argument for lowering the age of legally in Health Care Decisionmaking effective consent would be strengthened, although The findings of the core group of seven empirical other considerations would have to be taken into studies on the age-competence relationship in health account as well. Virtually all of the empirical care decisionmaking reviewed by OTA's contrac- research on the competency of minors to make tors are summarized in table 17-1 and discussed in health care decisions reviewed by OTA's contrac- more detail below. These core studies generally tors recognizes that the standard of comparison is the found few differences in health care decisionmaking decisionmaking ability of adults. as a function of age for adolescents as young as 14 or 15 years of age. It is important to note that most of the core studies did not collect information on Empirical Research on Minors' Competency To decisionmaking by adults older than 25, and most of Make Health Care Decisions the core studies did not collect information on To review the empirical research on the compe- decisionmaking by adolescents under age 13 (i.e., tency of minors to make health care decisions, ages 10 to 12). OTA's contractors selected a core group of seven Lewis, 1980-The 1980 study by Lewis com- empirical studies that address the cognitive develop- pared hypothetical pregnancy decisions for 42 un- ment of minors and tested whether minors differ married minors (ages 13 to 17) and young adults from adults in their ability to make health care (ages 18 to 25) awaiting the results of pregnancy decisions (1,18,48,49,55,56,86). Those core studies, tests in a clinic (55). Those who learned they were which are listed in table 17-1, share the following pregnant would be faced with the decision whether characteristics: to have an abortion or deliver a child. All 42 36See also L.H. Roth, A. Meisel, and C.W. Lidz, "Tests of Competence To Consent to Treatment" (74). (The various legal, medical and psychiatric tests of competency being utilized may be categorized as: evidencing a choice, "reasonable" outcome of choice, choice based on "rational" reasons, the ability to understand, and actual understanding.) 37As noted previously, this OTA Report focuses on individuals ages 10 through 18. Legally, 18-year-olds are considered adults in all but three States (where the age of majority is 19). In the studies comparing decisionmaking capabilities of adults and minors listed in table 17-1, therefore, 18-year-olds are regarded as adults. III-142 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services Table 17-1-Summary of Seven Core Empirical Studies of the Age-Competency Relationship in Health Care Decisionmaking Influence of age on decisionmaking Study Sample Decision domain No differences Differences found Lewis, 1980 N - 42 Pregnancy: knowledge In knowledge of laws; in The 18- to 25-year-olds Ages 13-17 V. 18-25 of law, source of advice, number of types of peo- were more likely to con- Possibly pregnant, un- reasons for choice ple consulted; in advice sult a professional; con- married females; diverse expected; in considera- sider their own ability to socioeconomic statuses; tion of childrearing abll- care for a child. The urban California ity; in hypothetical ad- 13- to 17-year-olds were vice giving. more likely to consider Impact of a child on their parents; to consider bility of deformity; and to perceive decision as ex- ternally determined. Lewis, 1981 N - 108 Cosmetic surgery, In consulting with peers With Increasing age, 1 Ages 12-19 choice of custodial par- or parents; in revising was increasing probabil- (grades 7-8, 10 and 12) ent, research: on acne attitudes in light of new ity of mentioning risks, Middle to upper socioeco- medication, on "mind" information. future consequences, nomic status; 87% ex- and desirability of con- pected to attend college; sulting an independent San Francisco specialist, as well as cau- tion against persons with vested interests. Weithorn and Campbell, 1982 N - 96 Choice of treatment alter- In expression of a deci- The 9-year-olds differed Ages 9, 14, 18, 21 natives for diabetes, epi- sion preference or from other groups on Half male, half female; tepsy, enuresis, depres- choice of treatments treatment choices for de- white; middle socioeco- sion; risks, benefits, etc. among 14-, 18-, 21-year- pression; they were more nomic status; younger olds; in reasons for likely to choose inpa- groups, Long Island; older choice (except as noted); tient treatment. in rea- groups, Washington, DC in factual understanding sons for choices, 9 and appreciation of prob- olds differed from other lems/consequences (ex- groups; 14-year-olds dif- cept as noted). fered on epilepsy. in tual understanding of the condition and apprecia- tion of the consequences, 9-year-olds differed from all others. Belter and Grisso, 1984 N - 60 Recognizing and protect- in recognition or protec- The 9-year-olds showed Ages 9, 15, 21 ing against violations of tion of patients' rights less recognition of pa- males; predominantly patients' rights by a pro- between 15-and21 -year- tients' rights violations white; middle-class; av- fessional olds who were briefed and falled to protect their erage to above average about such rights. own rights more often than IQ the other two groups. Kaser-Boyd et al., 1985 N - 62 Psychological treatment; in Identifying risks (Au- Nonsignificant trend for Ages 10-13 V. 14-20 risks, benefits thor's note: ns were too 10- to 13-year-olds to say Behaviorally disordered, small in some Instances did not know If risks ex- emotionally disturbed, to complete chi-sq]; in 8 isted. In benefits, 14- to learning disabled; some benefit dimensions. 20-year-olds thought with, without prior ther- psychotherapy helped apy experience; 70% mid- you learn new things. The de socioeconomic 14- to 20-year-olds used status, 20% low-mid, 10% more abstract concepts low; mostly white, 16 in describing benefits. nonwhite; 67% male; probably LA. Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-143 Table 17-1-Summary of Seven Core Empirical Studies of the Age-Competency Relationship In Health Care Decisionmaking-Continued Influence of age on decisionmaking Study Sample Decision Jomain No ences Differences found Kaser-Boyd et al., 1986 N 75 Psychological treatment; In distingulshing risks, None Ages 10-19 risks, benefits, and Irrel- benefits, and Irrelevant Adolescents with mild to evant considerations considerations; in treat- severe learning and ment decision vignettes. behavioral problems; mostly upper middle socioeconomic status, low to mid socioeconomic status; mostly white, 14 nonwhite; probably LA. Ambuel, 1989 N - 75 Broad range of knowl- in cognitive or volitional Females ages 13 to 15 Ages 13-21 edge, affect, decision competence (except who didnot consider abor- All females; diverse ra- conflict around among females ages 13 tion scored lower on the cial, economic, and re- unplanned pregnancy to 15 who did not con- measure of volitional com- ligious backgrounds sider abortion an alter- petence and most meas- native). ures of cognitive com- petence. "Full citations are listed at the end of this chapter. SOURCE: Office of Technology Assessment, 1991, adapted from J. Gittler, M. Quigley-Rick, and M.J. Saks, "Adolescent Health Care Declaionmaldng: The Law and Public Policy," prepared under contract to the Camegie Council on Adolescent Development for the Office of Technology Assessment, U.S. Congress, Washington, DC, February 1990. participants were asked to respond to a hypothetical study found no age-related differences in advice the question seeking advice for a person in that situation. participants said they would give regarding consul- In terms of the decision as to whether to have a tation with peers or parents and found no age-related child, this study found that the minors and young differences in participants' revisions of attitudes in adults did not differ from each other in terms of the light of new information. knowledge of relevant laws, number or types of On the other hand, this study found that with people consulted, the advice anticipated from those increasing age from 12 to 19, there was an increasing consulted, or considerations of childrearing ability tendency among participants to mention risks, future in giving advice to another person. consequences, and the desirability of consulting an On the other hand, the young adults in the study independent specialist (i.e., a specialist without were more likely than the minors to want to consult vested interests in the choice made), and there was an independent professional and more likely to an increasing tendency to express caution about the consider their own childrearing abilities in deciding advice of persons with vested interests in the choice made. whether or not to have a child themselves. The minors were more likely to consider the impact of Weithorn and Campbell, 1982-The 1982 study their child on their own parents and gave more by Weithorn and Campbell presented hypothetical weight to the likelihood of possible deformity of treatment dilemmas involving four health problems their baby. Furthermore, the minors tended to (diabetes, epilepsy, enuresis, and depression) to perceive the decision as being more externally participants ages 9, 14, 18, and 21 and asked determined than as being within their own power to participants what decisions they would make and the make. (This perception may simply reflect the reasons for those decisions (86). minors' life experience in other domains.) This study found that groups of participants ages Lewis, 1981-The 1981 study by Lewis asked 14, 18, and 21 did not differ in their decisions or students ages 12 to 19 (grades 7-8, 10, and 12) what reasons for decisions. Moreover, the decisions of advice they would give peers who were faced with these participants did not differ from those recom- a variety of choices: cosmetic surgery, choice of mended by health professionals for the problems in custodial parent, a research trial involving acne question. Groups of participants ages 14, 18, and 21 medication, and research on "the mind" (56). This also did not differ from each other on tests of factual III-144 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services understanding of the health problems or apprecia- dimensions. A serious problem noted by the authors, tion of the consequences associated with various however, is that in some of these comparisons, the options. numbers were too small to permit a significance test to be performed. In terms of differences in decision- The group of 9-year-olds, this study found, did making as a function of age, this study found that differ in many ways from the older groups. The participants ages 14 to 20 identified more potential 9-year-olds were more likely than the older groups benefits from psychotherapy and expressed the to select inpatient treatment for depression. Indeed, perceived benefits in more abstract terms than the study found an overall trend for younger participants ages 10 to 13. participants to be accepting of inpatient treatment and older participants to reject it. The 9-year-olds Kaser-Boyd et al., 1986-The 1986 study by also differed from the older groups in the reasons for Kaser-Boyd et al. asked 75 adolescents ages 10 to 19 their choices of treatment, in factual understanding with mild to severe learning and behavior problems of the conditions, and in appreciation of conse- to distinguish among risk and benefit factors, as well quences. as irrelevant considerations, with respect to a Belter and Grisso, 1984-The 1984 study by hypothetical decision to accept or refuse psychother- Belter and Grisso studied the ability of 60 middle- apy (49). One might regard the decisionmaking class males ages 9, 15, and 21 to recognize a ability of a group of adolescents with problems such violation of their rights as patients in a simulated as these as immediately suspect, but in fact a group counseling session and to take steps to assert and such as this may be the right group of adolescents to protect their rights against violations by the profes- be testing, because it is adolescents with problems sional (18). The research procedure involved half the such as theirs who might actually be asked to decide participants at each age level receiving briefings on whether to accept psychotherapy. Although this the rights of patients (e.g., the rights to refuse study does provide comparisons in decisionmaking treatment, to know the reason for referral, to among younger and older study participants up to 19 withhold information, to refuse to allow tape record- years of age, it does not provide comparisons ing of the session, and the rights of confidentiality between subjects with and subjects without the and access to records). In a subsequent session, problems mentioned. participants observed a videotaped counseling ses- In any event, this study found no differences in sion and were asked at various points whether or not decisionmaking as a function of age. Participants a right was being violated and, if so, what they would ranging in age from 10 to 19 years of age showed no do to protect the right. differences in distinguishing risks, benefits, and The Belter and Grisso study found that 15-year- irrelevant considerations, or in the psychological olds did not differ from 21-year-olds in their scores treatment decisions they made. on the recognition or protection of rights or in the Ambuel, 1989-The 1989 study by Ambuel benefit they gained from the briefings about pa- collected and analyzed data from 75 socioeconomi- tients' rights. On the other hand, this study found cally diverse females ages 13 to 21 who suspected an that 9-year-olds showed significantly lower recogni- unplanned pregnancy and were visiting a medical tion of or asserted protection of rights than did the clinic for a pregnancy test (1). This study is 15- or 21-year-olds, who did not differ from each noteworthy for combining a real-world setting in other. which research participants faced a potentially Kaser-Boyd et al., 1985-The 1985 study by serious and stressful decision with extensive and Kaser-Boyd et al. compared behaviorally disor- careful measurement of attitudes, affect, and cogni- dered, emotionally disturbed, and learning disabled tion. individuals ages 10 to 13 to those ages 14 to 20 in their ability to assess risks and benefits of psycho- The study found that-apart from females ages 13 logical treatment (48). to 15 who said they excluded abortion as an option-participants showed no age-related differ- This study found that the 10- to 13-year-olds did ences in three measures of cognitive competence not differ from the 14- to 20-year-olds in the (thoroughness of consideration of consequences, identification of risks or evaluation of eight benefit number of reasons considered, and quality of the Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-145 process and content of reasoning about pregnancy) to volunteer to participate (57). If a child did or in a measure of "volitional competence." volunteer, the consent of the child's parents was Females ages 13 to 15 who did not consider sought, and if granted, the child did participate in the ortion as an option (bet no other groups of minors, vaccine trial. Thus, the child's decision had potential categorized either by age or attitude toward abor- real consequences. tion) had significantiy lower scores than adults age 21 and under on every measure of competence This study found very few age-related differences except one measure of cognitive competence (the in the ability of classes of children to elicit informa- number of reasons considered). This difference tion about the flu and the vaccine and about potential suggests that females ages 13 to 15 who regard risks and benefits of participation in a vaccine trial, abortion as a possibility have cognitive and voli- although one class of 6-year-olds did not elicit all the tional competencies similar to or indistinguishable relevant information it could have. It is important to from those of young adult females, whereas females note that this study really measured group ability- age 13 and above whose competencies are lower rather than individual ability-to elicit information have ruled abortion out and are therefore not likely critical to making the decision to participate in to seek an abortion anyway. medical research. If, as seems likely, there is significant variation in decisionmaking capacity Findings of Other Studies on the Age-Competence among individuals within age groups, then measur- Relationship in Health Care Decisionmaking ing group ability would tend to minimize differences between age groups. In other words, assuming that The finding of several studies that are not part of the percentage of individuals who could think of all the core group discussed above provide some the questions to ask increases with age, then any of additional insight concerning age-related similari- these groups might as groups be able to ask all the ties and differences in health decisionmaking. right questions and appear equally capable, while in Lewis et al., 1977-A 1977 study by Lewis et al. fact important developmental changes were occur- systematically observed the behavior of elementary ring over time (as larger and larger percentages of hool children ages 5 to 12 in an innovative children in older classes would individually be able ogram in two Los Angeles schools (58). That to ask the appropriate questions). The basic question program allowed children to decide when a health before us pertains to the competence of minors as problem required the attention of the school nurse, individuals and the information-seeking of individu- to sign themselves out of class to see the nurse, and als that is more typical of the informed consent to choose among treatment options presented to process in our institutions. Still, it is striking that them by the nurse. In short, the program allowed the even in a group of 6-year-olds, there are enough children the same freedom as adults in making their group members that in all but one class all the own health care choices, and the children's choices relevant information was elicited by the children. had real consequences for treatment. The authors of this study found that children in Kazdin, 1986-A 1986 study by Kazdin had their school's self-activated health program made parents and their severely disturbed children rate the sensible (even in adult terms) use of their power to acceptability of different kinds and settings of choose. It is interesting to note that the elementary mental health treatment (51). 38 This study found that school children in this study are below the age at parents rated both outpatient treatment and hospital- which we would have any theoretical reason based ization as more acceptable than their children did. on developmental psychology to expect equivalence The parents rated hospitalization higher than outpa- tient treatment; the children rated them in the reverse between child and adult decisionmaking. order. Furthermore, the strength of treatment was Lewis et al., 1978-A 1978 study by Lewis et al. positively correlated with acceptability for parents invited 213 elementary school children ages 6 to 9, and negatively correlated for children. According to grouped in their classes, to become informed about Kazdin, these differences may very well reflect swine flu vaccine trials and to decide whether or not differences in the meaning of the treatments for "Special problems in the area of consent to mental health services were discussed earlier in this chapter. For a discussion of various mental health treatment settings available to adolescents, see ch. 11, "Mental Health Problems: Prevention and Services," in Vol. II. III-146 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services parents (e.g., relief) and children (e.g., abandon- tual skills, experience, condition severity, pressure ment). from peers or family, or skill training affect deci- Grisso, 1981-An important note of caution is sionmaking by minors. They do, however, point to areas in which the gathering of additional data about raised by a study that addresses not medical deci- sionmaking by minors but legal decisionmaking- minors' decisionmaking capacity would probably be useful. Grisso's 1981 study of juveniles interrogated by police, with particular attention to the decisionmak- Gender-Only one core study reviewed by OTA's ing of these youths in asserting or waiving their legal contractors specifically examined effects of gender rights (39). This study reminds us that minors on decisionmaking. That study, the 1982 study by making decisions in different contexts and different Weithorn and Campbell, used equal numbers of subsets of minors may show important differences in male and female participants and found no gender decisionmaking as compared with adults. differences in decisionmaking in hypothetical tr ment situations (86). Two other studies that exam- This study found that 42 percent of arrested adults chose not to answer police questions but that fewer ined the effect of gender and were reviewed by OTA's contractors were the 1977 and 1978 studies than 10 percent of arrested juveniles asserted their right to remain silent-and virtually none of the by Lewis et al. The 1977 study by Lewis et al. arrested juveniles under age 15 refused to answer reported that the patterns of utilization of health police questions. As a group, juveniles under age services by elementary school boys and girls (ages 15 showed little comprehension of the Miranda 5 to 12) participating in their school's self-activated warning40-so little comprehension in fact that their health program paralleled the utilization patterns of decisions to assert or waive those rights had little adults-i.e., girls made more use of the services 1 meaning. Furthermore, as many as half of the boys (58). The 1978 study by Lewis et al. reported juveniles ages 15 to 16 who had IQs below 80 or who that elementary school boys and girls ages 6 to 9 did were black or in lower socioeconomic groups also not differ in the questions they asked after being showed little comprehension of their legal rights and invited to volunteer for swine flu trials, but reported the consequences of asserting or waiving their both that boys volunteered less often than girls and rights. This study found that white juveniles who that girls more often than boys found themselves had greater contact with juvenile courts and police unable to make a choice about volunteering. evinced improved understanding of Miranda rights, Socioeconomic Status-None of the core studies but black juveniles who had such contact evinced reviewed by OTA's contractors examined the effect poorer understanding. Greater contact with police of socioeconomic status on decisionmaking, but and courts did, however, lead to greater understand- decisionmaking by minors from different socioeco- ing of the different roles of judges, lawyers, and nomic groups was compared in one of the other police.4¹ studies they reviewed. That study, the 1977 Lewis et Findings of Studies on How Variables Other al. study, found that the poorer elementary school Than Age Affect Adolescents' Health Care children (ages 5 to 12) in their school's self- Decisionmaking activated health program made more visits to the school health service than the more affluent children Variables other than age have important effects on (58). Furthermore, the poorer children saw their decisionmaking, and several studies involving some health as more in the control of physicians, while the of these other variables in the context of health more affluent children saw their health as being decisionmaking by minors are described below. The more influenced by forces that they themselves studies reviewed here do not permit any definitive could control. None of the other studies OTA's conclusions about how variables such as gender, contractors reviewed had enough minors from lower socioeconomic status, race and ethnicity, intellec- socioeconomic strata to allow conclusions about 39The U.S. Supreme Court has found juveniles to be competent to make their own decisions in this context and has held such waiver of constitutional rights by minors to be valid [Fare V. Michael C., 442 U.S. 707 (1979)]. "The Miranda warning is the standard warning given to apprise criminal suspects of their constitutional rights in regard to custodial interrogation by police-they have the right not to answer any questions and the right to the advice and assistance of an attorney. 41For a discussion of adolescents in the juvenile justice system, see ch. 13, "Delinquency: Prevention and Services," in Vol. П. Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-147 possible differences in decisionmaking related to that psychotherapy had low risks and that partici- socioeconomic status.⁴² pants who were currently referred to therapy saw somewhat more benefits to psychotherapy than Race and Ethnicity-Only one of the core participants who were not referred (48). studies OTA's contractors reviewed reported on the effect of race or ethnicity on decisionmaking by No other studies of which OTA is aware make adolescents. That study, the 1986 Kaser-Boyd et al. comparisons among experienced and inexperienced study among adolescents with mild to severe learn- decisionmakers. One would expect decisionmakers ing and behavior problems, reported that white, experienced with the decision domain to show some non-Hispanic adolescents obtained higher scores on differences from those who are new to the decision the psychological treatment decision vignettes than domain. Presumably, one advantage that older- other participants; but only 14 of the 75 subjects in especially considerably older-decisionmakers have this study were black or Hispanic (49). The 1977 is experience with the decision task, and presumably Lewis et al. study reported that as white elementary some decisions benefit more from such experience school children gained experience in their self- than others. More research on this topic would activated health program, they increasingly saw probably be useful. themselves as the decisionmakers, but that the same Condition Severity-Only one of the core stud- shift did not occur for the black or Hispanic children ies OTA's contractors reviewed examined the effect (58). of condition severity on competence to decide. This Intellectual Skills-Only one of the core studies study, the 1986 study by Kaser-Boyd et al., found OTA's contractors reviewed, the 1986 study by that participants not currently referred for psycho- Kaser-Boyd et al., compared participants with dif- logical treatment and participants with moderate ferent intelligence or a comparable measure of behavior problems scored higher on the psychologi- intellectual ability (49). This study found, unsurpris- cal treatment decision vignettes than participants ingly, that participants with poor reading compre- currently referred for psychological treatment and hension scored less well on the decision tasks. A participants with severe behavior problems, respec- point made earlier in this discussion was that there tively (49). seems to be considerable variation in decisionmak- Two of the other core studies provide a partial ing ability of individuals within particular age answer to the question of whether the severity of a groups. This within-group variation could be due to condition that does not impair a decisionmaker's a variable that is more important to the quality of intellectual functioning affects decisionmaking, the decisionmaking than age. Intelligence or reading 1982 study by Weithorn and Campbell (86) and the comprehension may very well be that variable, but 1981 study by Lewis (56). These two studies, which few data on this topic have been collected. presented to participants several different treatment Experience-Only two of the core studies OTA's dilemmas varying in seriousness, reported no sys- contractors reviewed examined the effect of experi- tematic differences in decisionmaking as a function of the seriousness of the condition. ence on decisionmaking. The 1986 study by Kaser- Boyd et al. found surprisingly that participants with Social Influence From Peers, Parents, or Pro- learning and behavioral problems who had had fessionals-One issue that often is raised, but experience with psychotherapy obtained lower seldom studied with care, is the ability of minors to scores on the psychological treatment decision make independent decisions not unduly influenced vignettes than participants without such experience by peers, parents, or professionals. As far as one can (49). The researchers advanced several hypotheses tell, the issue of minors' ability to make decisions to account for this finding. The 1985 study by without undue influence from peers, parents, or Kaser-Boyd et al. found that participants with professionals has not even benefited from a thought- learning, behavioral, and emotional problems who ful conceptual analysis of the questions that need to had experience with psychotherapy were more likely be asked. When is a rejection of information from than participants who had no experience to assert and about others evidence of independent judgment, **For a further discussion of issues pertaining to the delivery of health and related services to adolescents living in poverty, as well as adolescents in specific cultural subgroups, see ch. 18, "Issues in the Delivery of Services to Selected Groups of Adolescents," in this volume. III-148 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services and when is it a sign of irrationality? When is showed significantly higher recognition and prote sensitivity to the ideas and conduct of others tion scores than participants who did not. Th thoughtful open-mindedness, and when is it confor- 15- and 21-year-olds both derived significant ben mity? Does the tendency toward conformity vary fit from the briefing, but the 9-year-olds did no with the context? These and many other questions derive any benefit. With the briefings, the 15-yea remain to be answered. olds performed indistinguishably from the 21-yea olds in the recognition and protection of their right None of the core studies OTA's contractors as patients. reviewed examined the relationship between age and conformity to social influence in decisionmaking. None of the other core studies OTA's contracto Available research on the general relationship of age reviewed involved special efforts to teach decision and conformity to social influence suggests the making skills to minors. Some additional researc relationship between age and conformity to social has addressed the question of whether decisionmal influence is complex. The available research shows ing skills can be taught. For example, a 1988 stud inconsistent findings, which may be reconciled by by Weinstein has prepared children for psychothe positing that conformity to social influence de- apy by using videotaped modeling (84), and a 198 creases from ages 7 to 11, then increases from ages study by Hammes and Petersen has shown that six 11 to 13, and then begins to decrease after that A grade children can be taught resistance to persuasic 1988 study by Scherer and Reppucci examined the and thereby taught to make more independe; effects of parental pressure on hypothetical health decisions (41). These studies suggest that even decisions by adolescents ages 14 and 15 and found minors were found to lack adult-level competence that these adolescents yielded greatly to parental consent-which in general they have not been— pressure (76). The Scherer and Repucci study found might be possible to prepare minors to mal that the more consequential the health problem and decisions that reflect a heightened level of comp invasive the treatment choices, the less the 14- and tence. 15-year-olds yielded to parental pressure; the more socially sensitive the condition, the more these Implications for Public Policy of Empirical adolescents yielded to parental pressure. Research on Minors' Competence Surely the amount of social conformity people The studies that form the core of OTA's review exhibit varies widely with the social situation and the age-competence relationship in health ca setting as well as with the individual. In fact, it is at decisionmaking, though not great in number, 4 least conceivable that developmental effects on provide at least some empirical support for the id social conformity may actually be overshadowed by that minors as a class-especially minors age 14 situational variables. On the other hand, there may 15 through age 17-have the same capacity to I be complex situation-by-development interactions. health care decisions as young adults. These empi Studies to examine that possibility have yet to be cal studies, therefore, challenge the traditional a done. implicit assumption of the law that minors as a cla are unable to make health care decisions as well Skill Training-Only one of the core studies OTA's contractors reviewed examined the effect of adults. Furthermore, the studies' findings on th point are consistent with a huge body of research skill training on competence to decide. In the 1984 Belter and Grisso study, half the participants at each cognitive development generally.⁴ age level received briefings on patient rights and half Are the empirical studies reviewed in this chap did not. This amounts to specific training in one sufficient to establish that adolescents as a grot aspect of decisionmaking by patients (18). Unsur- ages 14 or 15 and above, are competent to consent prisingly, participants who received briefings their own health care? Probably not. Beyond bei "See P. Costanzo and M. Shaw, "Conformity as a Punction of Age Level" (32); and B. Bishop and L Beckman, "Developmental Conforms (20). "See D. Elkind, "Conceptual Orientation Shifts in Children and Adolescents" (34); J. Flavell, The Developmental Psychology of Jean Piaget ( and "An Analysis of Cognitive-Developmental Sequences" (37); B. Inhelder and J. Piaget, The Growth of Logical Thinking From Childhooc Adolescence (46); D.P. Keating, "Thinking Processes in Adolescence" (52); G.B. Melton, G.P. Koocher, and M.J. Saks, Children's Competence Consent (63); and E.D. Neimark and N. Lewis, "Development of Logical Problem Solving: A One-Year Retest" (69). Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-149 ec- experience, and how these might interact with the The age-competence relationship found in the generally ne- white middle-class groups studied. It is difficult to not know how well one may generalize from the groups ar- studied to the groups not studied. ar- Two basic responses can be made to the limita- hts tions of existing studies of minors' health care decisionmaking capabilities. One would be to carry ors out studies designed to generate more complete data. on- The other would be to make judgments as to whether rch the pattern of findings of existing studies is firm ak- enough to expect them to carry over into untested ady areas. Whatever is done, it is important to bear in let- mind that there is considerable variation among 986 individual adolescents. Some of the empirical stud- xth ies reviewed for this chapter note the great variation ion of performance within age groups, but they do not go lent beyond that. Because of individual variation in 1 if decisionmaking capacity among adolescents, some e to adolescents ages 14 and older do not, in fact, have -it the requisite capacity to make health care decisions. ake Even if the average minor of any given age group can pe- make health care decisions as well as the average Photo credit: U.S. Congress, Office of Technology Assessment adult, if the variability is much greater among the minors than it is among adults, then a large absolute Available empirical research challenges the traditional and number of minors might fall below whatever the implicit assumption of the law that minors as a class are unable to make health care decisions as well as adults. standard of competence is. The problem of individual variation in decision- on rather few in number, the studies reviewed leave making capacity within an age group can be dealt are gaps in the knowledge ideally needed for the do with in various ways. One way would be for public formulation of public policy pertaining to adoles- dea policymakers to require individualized determina- cents' involvement in health care decisionmaking. tions of competency by courts or even by health or One limitation of the available studies is that most of ake professionals. Unfortunately, however, an approach them did not examine minors' decisionmaking iri- based on individualized determinations would open performance in situations sufficiently real and stress- and the door to discriminatory and arbitrary determina- ful to see what effects such situations may have on tions unless there were tests of decisionmaking ass their decisionmaking performance (although the few capacity that were reliable and valid and that could as that did examine this found the same pattern of his be administered easily-and it is doubtful that there results as the other studies). Another limitation of are such tests. Moreover, individualized determi- on the available studies is that they generally compared nations can be quite expensive in terms of resources. minors' decisionmaking with the decisionmaking of ner very young adults rather than with that of adults of Another way of dealing with the problem of various ages. Still another limitation of available up, individual variation in decisionmaking capacity to studies is that they leave open several important would be for public policymakers to establish a ing questions about the effects exerted on minors' rebuttable legal presumption of competence based decisionmaking by factors such as socioeconomic on chronological age that could be used by courts to ity" status, ethnicity, social influence, skill training, and make individualized determinations of competence (36) "Some observers suggest that not one of the usual tests of competence relied on by the law and health professionals-evidencing a choice, d to reasonableness of outcome of choice, "rational" reasons, ability to understand, actual understanding-is or can ever be used consistently and that 8 To changing circumstances and considerations modify the tests that the law or clinicians apply (74). III-150 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services (31).⁴⁶ Thus, for example, public policymakers cents, parental consent and notification require could establish a legal presumption that any minor ments may sometimes pose barriers to access. age 14 or above is competent to make health care decisions, but could also allow for the use of The ultimate responsibility for deciding how the evidence of an individual's inability to make such law should allocate authority for making decisions decisions to rebut that presumption.⁴⁷ about an adolescent's health care rests with public policymakers-legislators judges, and administra- Finally, it must be noted that considerations of tors of public programs. If public policymakers are minors' health care decisionmaking capacity have to formulate appropriate public policy pertaining to not been the sole determinant of the degree of the allocation of authority for adolescent health care freedom minors have been granted with respect to decisionmaking, they must balance the interests o: obtaining health services on their own. As pointed adolescents, parents, health care providers, and the out earlier in this chapter, the presumption that state. Balancing these interests is no easy minors are incompetent to make decisions about especially when the balancing has to be done in { health care based on assumptions about minors' lack political environment in which policymakers must of health care decisionmaking capacity is only one rely on value judgments about which there is nc of several rationales-albeit a major rationale-for consensus. It is at least possible, however, that ar parental consent and notification requirements. It analysis of the interests of the various parties also must be noted that only some of the recognized involved can serve as a conceptual framework for exceptions to parental consent and notification the development of clearer, more rational, and more requirements are based on a rejection of this legal consistent policies. Such an analysis is presented in presumption and underlying assumptions. In short, box 17-B. the capacity of a minor to make health care decisions may be a necessary but not a sufficient Laws related to the allocation of authority for condition for allowing a minor to obtain health decisions about the provision of health services to services on his or her own. Conversely, the lack of minors-individuals under age 18 in 47 States anc capacity on the part of a minor to make health care the District of Columbia, and under age 19 in 3 decisions may not preclude allowing the minor to States-have historically been the province of State obtain health services without parental permission. legislatures, State courts, and State administrative agencies. As noted in this chapter, existing State laws governing parental consent and notification foi Conclusions and Policy Implications different types of health services vary widely from State to State, and the laws of a particular State ofter This chapter began by asking how the law should vary with respect to different types of services 01 allocate authority for making decisions about an situations. For the most part, therefore, existing State adolescent's health care among the adolescent, the laws do not furnish clear and consistent answers tc adolescent's parents, health professionals, and the the question of how authority for minors' health care state. It is important to emphasize that the way in decisionmaking is allocated. which the law allocates adolescent health care decisionmaking authority does not become critical, Given the array of laws and regulations described or even very relevant, unless the adolescent and one in this chapter, many adolescents-and perhaps or another of the parties just mentioned are in even providers-are probably uncertain about how conflict. As noted earlier, however, potential or these laws and regulations pertain to them a: actual decisionmaking conflicts can and do some- individuals. The involvement of the U.S. Supreme times occur. In the case of family planning and Court and lower Federal courts in the allocation o; abortion services and possibly other types of health authority for decisions about family planning ( services that may be needed or wanted by adoles- abortion services through their power to interpret the 46See F.E. Zimring, The Changing Legal World of Adolescence (90). "See President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Car. Decisions, Volume 1: Report (72). "See R. Bennett, "Allocation of Child Medical Care Decision-Making Authority: A Suggested Interest Analysis" (19); L.S. Ewald, "Medics Decision-Making for Children: An Analysis of Competing Interests" (35); M.S. Wald, "Children's Rights: A Framework for Analysis" (82); Harvan Law Review, "Developments in the Law-The Constitution and the Family" (42); and F.E. Zimring, The Changing Legal World of Adolescence (90) Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-151 Box 17-B-A Conceptual Framework To Aid Public Policymakers in Formulating Policy Related to the Allocation of Authority for Adolescent Health Care Decisionmaking A conceptual framework to aid public policymakers in formulating policy related to the allocation of authority for adolescent health care decisionmaking can be supplied by analyzing the interests of the parties who may involved in such decisionmaking-namely, the adolescent, the adolescent's parents, the health care providers, and the state. The essential issue to be considered in such an analysis is: Does the state have an interest or interests derived from the interests of the adolescent, the adolescent's parents, or health care providers-or does the state have an independent interest-that would justify a particular allocation of authority for adolescent health care decisionmaking via statutes, judicial decisions, or administrative regulations? Interests of the Adolescent and the State-An adolescent has obvious interests in protecting his or her OWN life and in maintaining good physical and mental health-interests that translate into an interest in timely access to needed health services. The state, under its parens patriae power, also has an interest in protecting the life and health of the adolescent and thus also has an interest in ensuring the adolescent's access to needed health services. The nature and extent of the adolescent's interest-and by extension the state's interest-in the adolescent's access to health services varies, depending on the type of service and circumstances. Clearly, the interest is greatest in the case of health services that are needed to preserve life (e.g., emergency medical services for a seriously injured or suicidal adolescent) and less in the case of health services that may be viewed as desirable but are not necessary to preserve or even to achieve or maintain health (e.g., cosmetic surgery). In situations where the adolescent's life or health may be at stake, the adolescent's interest in access to services should be paramount in any balancing of interests to arrive at an appropriate allocation of the authority to make decisions concerning the provision of health services to adolescents. Given the interests of the adolescent and the state in ensuring that the adolescent has access to needed health services, an issue that arises is whether-and if so, to what degree-legally mandated parental consent and/or notification requirements create barriers to adolescents' access to services. Several empirical studies have found that such requirements do create barriers to adolescents' access to and utilization of family planning and abortion services (21,22,25,26,28,78,79,87.88) the applicability of the findings of these studies to other types of services, however, remains unclear. If policymakers are considering the advisability of allowing adolescents to make their own health care decisions, a central concern becomes the competency of adolescents to make appropriate determinations as to their need for services. Some empirical studies. which are reviewed in this chapter, suggest that adolescents ages 14 or 15 and above have the same capacity to make health care decisions as young adults. It is important to bear in mind, however, that these studies have a number of limitations. Furthermore, adolescents within these age groups exhibit individual variation in decisionmaking capacity, and this variation itself has implications for public policy. Interests of the Adolescent's Parents and the State-Parents and their minor children typically have affectional and other ties, and the parents of most adolescents are likely to have an interest in ensuring that decisions about the provision of health services for their adolescent child will benefit him or her. In some cases, however, an identity of interest between an adolescent and the adolescent's parents cannot be assumed; nor can it be assumed that the parents will always act in the adolescent's best interests in health care decisions affecting the adolescent. Parents have responsibility for the care, support, and rearing of their minor children, and the parents of an adolescent may have an interest in maintaining their authority over the adolescent. The parents also may have a more generalized interest in protecting their family's autonomy and privacy and in promoting their family's stability and cohesiveness. The state may or may not have an interest in reinforcing parental authority. The state certainly has an interest in having the parents continue to assume responsibility for their adolescent child, however, and if parental authority is reduced, parents may be less willing to assume this responsibility. The state also has an interest in protecting family autonomy and privacy, which are widely valued in American society, but the protection of family and privacy is not necessarily the same as reinforcing parental authority. The state also has an interest.In family cohesiveness and stability, but this is not necessarily the same as reinforcing carental Suthority Interests of Health Care Providers-The interests of health care providers amo seldom discussed mentioned in discussions conceming the allocation of authority for adolesced health care Certainly, however, health care providers can be said to have an interest in providing service to that III-152 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services Box 17-B-A Conceptual Framework To Aid Public Policymakers in Formulating Policy Related to the Allocation of Authority for Adolescent Health Care Decisionmaking-Continued are consistent with their professional ethics (e.g., standards pertaining to confidentiality) and consistent with accepted professional practices. Providers have an interest in being able to receive compensation for services they provide. Providers also have a more narrow, but nonetheless significant interest, in clear and consistent laws to enable them to avoid unintentional violation of these laws. It is not clear, however, whether or to what degree the state has an interest in promoting or furthering these interests of health care providers. Independent Interests of the State-Although, to some extent, the state's interests may be derived from and substantially the same as those of the adolescent, the adolescent's parents, and health care providers, the state also has its own independent interests. Thus, the state has a clear independent interest in ensuring that adolescents are tested and treated for sexually transmitted diseases to prevent the spread of those diseases and thereby protect its citizens from these diseases. To the extent that adolescent childbearing results in increased public expenditures for health and human service programs that serve families started when the parents were adolescents (e.g., public programs such as the Medicaid program, the Aid to Families With Dependent Children program, and the Food Stamp Program) and to the extent that adolescent childbearing is associated with negative health, educational, economic, and social consequences for these families,¹ the state may also have an independent interest in ensuring access of adolescents to family planning services and abortion services. Interests of the Various Parties Depending on the Types of Health Services Involved-The interests of the adolescent, the adolescent's parents, the state, and health care providers may well differ depending on the types of health services involved-and the way the interests are balanced may well differ depending on the types of services involved. Thus, analyzing the interests of the parties concerned may lead to rules regarding the proper allocation of authority for adolescent health care decisionmaking that vary for different types of services. What this means for policymakers is that while one set of rules may appropriately govern the allocation of decisionmaking authority for general medical care, another set of rules may appropriately govern the allocation of decisionmaking authority for family planning services, another set of rules may govern the allocation of this authority for mental health services, and still another set of rules may govern the allocation of this authority for substance abuse treatment and counseling. 1Various studies have different findings considering the consequences of adolescent childbearing (38,54,80,89). For a further discussion of this topic, see ch. 10, "Pregnancy and Parenting: Prevention and Services," in Vol. II. provisions of the U.S. Constitution may very well care decisionmaking. At least in theory, Congress add to their uncertainties. One way of reducing may enact legislation that would have the effect of adolescents' uncertainties, apart from moving laws establishing particular substantive policies in this toward greater uniformity, would be to incorporate area at the State and local level.4 information about the legal aspects of access to health services for adolescents in health education One way for Congress to take on a larger role in courses offered to adolescents in a State. Such formulating public policies pertaining to the alloca- information would give adolescents the information tion of authority for adolescent health care decision- they need to make choices about whether or not to making would be to enact legislation conditioning seek care. States' receipt of Federal funds for specified pur- Responsibility for allocating authority for health poses on the States' having statutes or administrative care decisionmaking now rests primarily with the rules and regulations that incorporate particular State courts and legislatures and Federal courts. If it substantive policies with respect to health care chose to, however, the U.S. Congress could play a decisionmaking for and by adolescents. To OTA's greater role in formulating public policies pertaining knowledge, this approach has not been used by to the allocation of authority for adolescent health Congress in this realm to date. 49As noted earlier, the U.S. Supreme Court is the final arbiter of what State laws are permissible and impermissible under the U.S. Constitution Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-153 An alternative way for Congress to expand its role communications involving adolescents, it presuma- would be to enact legislation that requires federally bly would move laws governing matters such as "ed programs that support the provision of health parental consent and notification toward greater es for adolescents to adopt particular substan- uniformity and coherence. Assuming for the sake of are policies with respect to the allocation of argument that greater uniformity and coherence is authority for adolescent health care decisionmaking. desirable, there remains the issue of what substan- Congress authorizes and appropriates funds for a tive policies Congress should adopt. That is a variety of programs that provide reimbursement or political judgment-some people would undoubt- grants for adolescent health services-for example, edly support requiring or encouraging parental involvement in decisions concerning health services the Medicaid program authorized under Title for adolescents and others would support giving XIX of the Social Security Act, adolescents a substantial measure of autonomy in the maternal and child health services block such decisions. To help guide policymakers in grant programs authorized under Title V of the decisions governing the allocation of authority for Social Security Act, health care decisionmaking, further empirical re- the family planning services and research search on the decisionmaking capabilities of adoles- program authorized under Title X of the Public cents and factors that may influence these capabili- Health Service Act, and ties (e.g., age, prior experience, situational factors, the alcohol, drug abuse, and mental health intelligence) would probably be useful. services block grant program authorized under Title XIX of the Public Health Service Act.⁵⁰ Chapter 17 References The Federal laws authorizing and appropriating 1. Ambuel, B., "Developmental Change in Adolescents' Prychologi- funds for these programs and the regulations and cal and Legal Competence To Consent to Abortion: An Empirical rules issued by the agencies administering these Study and Quantitative Model of Social Policy," doctoral disserta- programs at the Federal level generally do not deal tion, University of Illinois, 1989, Dissertation Abstracts Interna- tional (in press). directly with questions of whether adolescents must 2. American Academy of Child and Adolescent Psychiatry, Code of parental consent to participate in the programs, Ethics (contains clarification notes) (Washington, DC: 1980). Jer parents must be notified of adolescents' 3. American Academy of Child and Adoleacent Psychistry, "Adoles- cent Pregnancy and Addition Policy Statement," Washington, DC, participation in the programs, or whether health care policy statement adopted by the Council 1975 and amended by the records and communications between program serv- Executive Committee, Mar. 19. 1982. ice providers and adolescents are confidential vis-à- 4. American Academy of Pediatrics, Committee on Youth, "A Model Act for Consent of Minors for Health Services," reprinted in vis their parents. In the absence of explicit direc- Pediatrics 51(2):293-96, 1973. tives from Congress or Federal agencies, the admin- 5. American Academy of Pediatrics, Conference on Consent and istrators of federally funded programs are free-so Confidentiality in Adolescent Health Care, R.S. Moore and A.D. Hofmann (eds.) (Elk Grove Village, L: 1982). long as they remain within the parameters imposed 6. American College of Obstetricians and Gynecologists, "Providing by State law and Federal constitutional law-to Effective Contraception to Minors," Washington, DC, policy establish their own policies regarding parental statement approved by the Executive Board, May 1971. 7. American College of Obstetricians and Gynecologists, "ACOG consent and notification requirements and the confi- Statement of Policy-Confidentiality in Adolescent Health Care," dentiality of records and communications involving reprinted in American Academy of Pediatrics News, April 1989. 1 Drs. 8. American Law Reports, "Doctors' Disclosure of Confidential Information," American Law Reports 4th 48:668-713 (Rochester, If Congress were to legislate in the area of parental NY: The Lawyer's Co-Operative Publishing Co., 1986). 9. American Medical Association, Principles of Medical Ethics consent and notification and confidentiality of (Chicago, IL: 1971). Some of these Federal programs are discussed in other chapters of this report. Medicaid, for example, is discussed in ch. 16, "Financial Access to Services." The Title X family planning program is discussed in VoL II in ch. 10, "Pregnancy and Parenting: Prevention and Services." The 1 and child health services block grant program is discussed to some extent in ch. 9, "AIDS and Other Sexually Transmitted Diseases: Prevention Services." The alcohol, drug abuse, and mental health services block grant program is discussed in ch. 11, "Mental Health Problems: Prevention and Services," and ch. 12, "Alcohol, Tobacco, and Drug Abuse: Prevention and Services." A number of these programs are also discussed in ch. 19, "The Role of Federal Agencies in Adolescent Health," in this volume. There have been some exceptions, for example, the previously discussed final rule issued by the U.S. Department of Health and Human Services in 1987, which prohibits federally funded alcohol or drug abuse programs from notifying a minor's parent of the minor's application for treatment without the minor's consent but only in States where State law permits minors to obtain alcohol or drug treatment without parental consent [42 CFR, Part 2.14 (1 1. 32-872 0 91 - 6 QL 3 III-154 Adolescent Health-Volume III: Crosscutting Issues in the Delivery of Health and Related Services 10. American Nurses' Association, Code for Nurses With Interpretive 35. Ewald, LS,, "Medical Decision-Making for Children: An Analysis Statements (Kansas City, MO: 1985). of Competing Interests," St. Louis University Law Journal 25:689- 11. American Prychiatric Association, Opinions of the Ethics Commit- 733, 1982. see on the Principles of Medical Ethics (Washington, DC: 1986). 36. 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Appelbaum, P.S., Lidz, C.W., and Meisel, A., Informed Consent: 44. Hofman, BD, "The Squeal Rule: Statutory Resolution and Legal Theory and Clinical Practice (New York, NY: Oxford Constitutional Implications-Burdening the Minor's Right of University Press, 1987). Privacy," Duke Law Journal 1984:1325-1357, 1984. 18. Belter, R.W., and Grisso, T, "Children's Recognition of Rights 45. Horowitz, R.M., "Children's Rights: A Look Backward a Violations in Counseling." Professional Psychology: Research and Glance Ahead," Legal Rights of Children, R.M. Horowitz and H.A. Practice 15:899-910, 1984. Davidson (eds.) (Colorado Springs, CO: Shepard's/McGrew-Hill, 19. Bennett, R,, "Allocation of Child Medical Care Decision-Making 1984). Authority: A Suggested Interest Analysis," Virginia Law Review 46. Inhelder, B., and Piaget, 3., The Growth of Logical Thinking From 62:285-330, 1976. Childhood to Adolescence (New York, NY: Basic, 1958). 20. Bishop, B., and Beckman, L, "Developmental Conformity," 47. Institute of Judicial Administration and American Bar Association, Developmental Psychology 5(3):536, 1971. Juvenile Justice Standards Project, Standards Relating so Rights of 21. Blum, R.W., and Resnick, M., "Adolescent Sexual Decision- Minors (Cambridge, MA: Ballinger Publishing Co., 1980). Making: Contraception, Pregnancy, Abortion, Motherhood," Pedi- 48. Kaser-Boyd, N., Adelman, H.S., Taylor L, et al., "Minors' Ability atric Annals 11(10):797-805, 1982. To Identify Risks and Benefits of Therapy." Professional Psychol- 22 Blum, R.W. Resnick, M., and Stark, T, "The Impact of Parental ogy: Research & Practice 16(3):411-417. 1985. Notification Law on Adolescent Abortion Decision-Making." 49. Kaser-Boyd, N, Adelman, HS., Taylor L. at al, "Children's American Journal of Public Health 77(5):619-620, 1987. Understanding of Risks and Benefits of Psychotherspy," Journal of 23. Boumil, M., "Dispensing Birth Control in Public Schools: Do Clinical Child Psychology 15(2):165-171, 1986. Parents Have a Right To Know?" Seton Hall Law Review 50. Katz, 3., Schroeder, W., and Sidman, L. "Emancipating Our 18:356-377, 1988. Children-Coming of Age in Legal America," Family Law 24. Cady, F, "Emancipation of Minors," Connecticut Law Review Quarterly 7:211-230, 1973. 12:62-91, 1979. 51. Kazdin, A.E., "Acceptability of Psychotherapy and Hospitalization 25. Cartoof, V.G., and Klerman, L.V. "Parental Consent for Abortion: for Disturbed Children: Parent and Child Perspectives," Journal of Impact of the Massachusetts Law." American Journal of Public Clinical Child Psychology 15(4):330-340, 1986. Health 76(4):397-400, 1986. 52 Keating. DP, "Thinking Processes in Adolescence," Handbook of Adolescent Psychology, J. Adelsen (ed.) (New York, NY: Wiley, 26. Chamie, M., Eisman, S., Forrest, JD, at al., "Factors Affecting 1980). Adolescents' Use of Family Planning Clinics," Family Planning 53. Keeton, W.P., Dobbs, D.B., Keeton, R.E., at al. (eds.), Prosser and Perspectives 14(3):126-139, 1982. Keeton on the Law of Torts, 5th ed. (St. Panl, MN: West Publishing 27. Clark, H.H., Jr., The Law of Domestic Relations in the United States, Co., 1984). 2d ed. (St. Paul, MN: West Publishing Co., 1988). 54. Lewin, T, "Three Studies Cause Confusion on Impact of 28. Clary, F,, "Minor Women Obtaining Abortions: A Study of Pregnancy," New York Times, P. A10 (col. 3), Mar. 7. 1990. Parental Notification in a Metropolitan Area," American Journal of 55. Lewis, C.C, "A Comparison of Minors' and Adults' Pregnancy Public Health 72(3):283-285, March 1982. Decisions," American Journal of Orthopsychiatry 50(3):446-453, 29. Cleary, E.W., McCormick on Evidence, 3d ed. (St. Paul, MN: West 1980. Publishing Co., 1984). 56. Lewis, C.C., "How Adolescents Approach Decisions: Changes 30. Collins, C,, "Abortion Focus Shifting to Toenagers," New York Over Grades Seven to Twelve and Policy Implications," Child Times, P. 1 (col. 3), Oct. 1, 1989. Development 52:538-544, 1981. 31. Comment, "Speaking for a Child: The Role of Independent Counsel 57. Lewis, C.E., Lewis, M.A., and Ifekwunigue, M, "Informed for Minors," California Law Review 75:681-706, 1987. Consent by Children and Participation in an Influenza Vaccine 32. Costanzo, P,, and Shaw, M., "Conformity as a Function of Age Trial," American Journal of Public Health 68(11):1079-1082, Level," Child Development 37:967-975, 1966. 1978. 33. Dodson, G.D., "Legal Rights of Adolescents: Restrictions on 58. Lewis, C.E., Lewis, M.A., Lorimer A., et al., "Child-Initisted" Liberty, Emancipation, and Status Offenses," Legal Rights of The Use of School Nursing Services by Children in an 'Adult-Free' Children, R.M. Horowitz and H.A. Davidson (eds.) (Colorado System," Pediatrics 60:499-507, 1977. Springs, CO: Shepard's/MoGraw-Hil, 1984). 59. Lidz, C.W., Meisel, A, Zerubavel, E., et al., Informed Consent: A 34. Elkind, D, "Conceptual Orientation Shifts in Children and Study of Decisionmaking in Psychiatry (New York, NY: The Adolescents," Child Development 7(3):493-98, 1966. Guilford Press, 1984). Chapter 17-Consent and Confidentiality in Adolescent Health Care Decisionmaking III-155 60. Lovett, J., and Wald, M.S., "Physician Attitudes Toward Confiden- 12(2):123-141, 1988. tial Care" Journal of Pediatrics 106:517-520, 1985. 77. Schonberg, S.K., Montefiore Hospital, Bronx, NY, personal com- 51. Melton, G., "Children's Consent: A Problem in Law and Social munication, July 1989. Science," Children's Competence To Consent, G. Melton, G. Koocher, and M. Saks (eds.) (New York, NY: Plenum Press, 1983). 78. Torres, A., "Does Your Mother Know ...?" Family Planning o2. Melton, G.B., "Legal Regulation of Abortion, Unintended Ef- Perspectives 10(5):280-282, 1973. fects," American Psychologist 42:79-83, 1987. 79. Torres, A_, Forrest, J.D., and Eisman, S, "Telling Parents: Clinic 63. Melton, G.B., Koocher, G.P. and Saks, M.J. (eds.), Children's Policies and Adolescents' Use of Family Planning and Abortion Competence To Consent (New York, NY: Plenam Press, 1983). Services," Family Planning Perspectives 12(6):284-292, 1980. 64. Mnookin, R.H., Child, Family and State: Problems and Materials 80. U.S. Congress, Library of Congress, Congressional Research on Children and the Law (Boston, MA: Little, Brown, 1978). Service, Teenage Pregnancy: Issues and Legislation (Washington, 65. National Association of Children's Hospitals and Related Institu- DC: April 1988). tions, Inc., "The Pediatric Bill of Rights," Wilmington, DE, 81. Wadlington, W., "Minors and Health Care: The Age of Consent," endorsed 1974. Osgoode Hall Law Review 11:115-822, 1973. 66. National Association of Social Workers, Code of Ethics- 82. Wald, M, "Children's Rights: A Framework for Analysis," Professional Standards (Silver Spring, MD: 1980). University of California, Davis Law Review 12:255-282, 1979. 67. National Association of Social Workers, Provisional Council on CHnical Social Work, NASW Standards for the Practice of Clinical 83. Wardle, LD,, Blakesley, C.L., and Parker, J.Y., Contemporary Social Work-Professional Standards (Silver Spring, MD: 1989). Family Law: Principles, Policy, and Practice (Deerfield, IL: 68. National Conference of Commissioners on Uniform State Laws, Callaghan, 1988). Uniform Health-Care Information Act, Uniform Laws Annotated, 84. Weinstein, M., "Preparation of Children for Psychotherapy Part 1. 9:475-520 (St. Paul, MN: West Publishing Co., 1988). Through Videotaped Modeling," Journal of Clinical Child Psy- 69. Neimark, E.D., and Lewis, N., "Development of Logical Problem chology 17:131-136, 1988. Solving: A One-Year Retest," Child Development 39(2):527-536. 85. Weithom, LA, "Mental Hospitalization of Troublesome Youth: 1968. An Analysis of Skyrocketing Admission Rates," Stanford Law 70. New York Times, "Kansas Is Urged To Curb Abortion," New York Review 40:773-838, 1988. Times, P. 28 (col. 1), Nov. 9. 1989. 86. Weithorn, LA., and Campbell, S.B., "The Competency of Children 71. New York Times, "Virginia Senators Stall Bill To Curb Abortion," and Adolescents To Make Informed Treatment Decisions," Child New York Times, p. 47 (col. 5). Feb. 11. 1990. Development 53:1589-1598, 1982. 72. President's Commission for the Study of Ethical Problems in 87. Zabin, LS, and Clark, SD, "Why They Delay: A Study of Medicine and Biomedical and Behavioral Research, Making Health Teenage Family Planning Clinic Patients," Family Planning Care Decisions, Volume 1: Report (Washington, DC: 1982). Perspectives 13(5):205-216, 1981. 73. Rosoff, AJ., Informed Consent: A Guide for Health Care Providers (Rockville, MD: Aspen Systems Corp., 1981). 88. Zabin, LS, and Clark, S.D., "Institutional Factors Affecting 74. Roth, LH, Meisel, A., and Lidz, C.W., "Tests of Competence To Teenagers' Choice and Reasons for Delay in Attending a Family Consent to Treatment," American Journal of Psychiatry 135:279- Planning Clinic," Family Planning Perspectives 15(1):25-29, 1983. 284, March 1977. 89. Zabin, LS, and Hirsch, M.B., "When Urban Adolescents Choose , Rothenberg. K.H., "Medical Decision-Making for Children," Aboution: Effects on Education, Psychological Status, and Subse- BioLaw, J. Childress and R. Gaare (eds.) (Frederick, MD: Univer- quent Pregnancy," Family Planning Perspectives 21(6):248-255, sity Publications of America, 1986). 1989. 76. Scherer, D.G., and Reppacci, N.D., "Adolescents' Capacities To 90. Zimring, FE, The Changing Legal World of Adolescence (New Provide Voluntary Informed Consent," Law and Human Behavior York, NY: Free Press/Macmillan, 1982). THE WHITE HOUSE December 22, 1997 Ms. Ann Moore President People Time & Life Building Rockefeller Center New York, New York 10020 Dear Ms A Moore: Thank you for your letter and invitation to participate in your efforts to raise awareness about teen pregnancy. I am grateful for your leadership on this issue and have forwarded a copy of your letter to appropriate members of my staff for consideration. It was good to hear from you again. With best wishes for a blessed holiday season, I am Sincerely yours, Hillary Hillary Rodham Clinton CC: Melanne Verveer, Chief of Staff Marsha Berry, Director of Communications Patti Solis Doyle, Director of Scheduling dcc: Jen Kleint I hope we'll heable to work together as this Important issue- - thanks. CC: Melanne, you, Time Inc. Path People People Time & Life Building Rockefeller Center New York, NY 10020 Ann S. Moore 212-522-3970 President 212-522-7639 Fax December 10, 1997 Mrs. Hillary Rodham Clinton The White House 1600 Pennsylvania Avenue Washington, DC 20500 ATTN: Pamela Cicetti Dear Mrs. Clinton: While I am sorry we couldn't get you to celebrate your 50th birthday with us in New York, I wonder if we could schedule a substitute luncheon in May 1998 on a subject of mutual interest. I continue to follow the issue of teen pregnancy ever since the President hooked me on The National Campaign to Prevent Teen Pregnancy. The reception you hosted last spring at the White House was a wonderful event for the Campaign and I was quite delighted to learn that Katherine Graham donated her Sara Lee Award to it. PEOPLE has chosen the Campaign as one of our three year-end charities. I understand my friend, Pat Fili, the President of ABC Daytime, is hosting a briefing on teen pregnancy in the first quarter All of us, however, need to do more to keep the subject "top of mind" among media leaders, because this is a long, hard problem to solve. In honor of May being "Teen Pregnancy Prevention Month," I would volunteer, with Teen PEOPLE editor, Christina Ferrari, to assemble the editors of all the major magazines read by pre-teen and teen girls to discuss the teen pregnancy problem and its solutions. 1 am hoping your schedule will allow you to attend the luncheon and participant on a discussion panel. Your presence at such an event would make it a "must attend" session where we could corral others to join in finding a much needed solution to our children becoming parents before their time. I will ask someone at The Campaign to Prevent Teen Pregnancy to try and coordinate a date with your office. Best wishes for a Happy Holiday. Sincerely, aun moore ASM:cm A Time Warner Company TO: Hillary Rodham Clinton FROM: Jennifer Klein DATE: 3/25/96 RE: Teen Pregnancy You had asked for a critique of the manuscript by Lainie Friedman Ross that Dr. Koop forwarded to you. Attached please find a short critique by Dr. Felicia Stewart, Deputy Assistant Secretary for Population Affairs at HHS. I have also attached an article by the Council on Scientific Affairs of the American Medical Association on the same subject. Dr. Ross uses this article to support her claim that "most adolescents do discuss these issues with their parents." The article actually concludes that confidential care is critical for adolescents and cites data showing that adolescents are more likely to seek care if they can do so confidentially. It also recommends that physicians involve parents in the medical care of an adolescent patient when it is in the best interest of the patient. TO: Hillary Rodham Clinton FROM: Jennifer Klein DATE: 3/4/96 RE: Dr. Koop's Letter on Lainie Friedman Ross You had asked me to look into the four questions on the attached post it: 1. You did not receive the manuscript from Lainie Friedman Ross. 2. I agree that Dr. Ross overstates when she cites your articles as part of a "movement that claims that competent children should not be treated differently from their competent adult counterparts." Your 1979 article, "Children's Rights: A Legal Perspective," does argue that "[t]he first thing to be done is to reverse the presumption of incompetency [that has been applied to children] and instead assume all individuals are competent until proven otherwise." However, you do not imply that children determined to be competent should be treated the same as adults, but only that they should be given certain given rights and responsibilities. You state that "[t]here are certain children at certain ages in certain circumstances who can and should exercise responsibilities," and that the law should recognize that reality. Dr. Ross' article concludes that children should not be able to get prescription contraceptives without parental consent. Your article does say that "[d]ecisions about motherhood and abortion and others where the decision or lack of one will significantly affect the child's future should not be made unilaterally by parents." 3. Janet Abrams is the staff contact for the "National Campaign to Reduce Teenage Pregnancy" which is a private, nonpartisan organization chaired by Dr. Henry Foster. The organization has not included Dr. Ross (in fact, they have never heard of her) but would be happy to consider her. 4. I have asked Felicia Stewart, the head of the Office on Population Affairs, to critique the article for you. C. EVERETT KOOP, M.D. To Jen- I Ril Dever receive a capy 1 this? February 2, 1996 2 Please Are P.8 The Honorable Hillary Rodham Clinton Where she mentions my Office of the First Lady articlest I believe 2nd Floor, West Wing ovustates Cened you THE WHITE HOUSE 1600 Pennsylvania Avenue Washington, DC 20500 review for me? Dear Hillary: (3)who is liaison for I recently was sent a manuscript by the journal, Polit to write a critique. When I read it, I thought that it was SC Tean Pregnancy permission from the editor to forward it to you. He told n turntace' but I am not sure whether your staff put it in your hands. M This person has In any event, here is Lainie Friedman Ross' pie been included +/N Policy." I would like you to be familiar with her point of was sent to you also asked that you write a critique. consideral. Would Dr. Ross make a good addition to your ad' (4) Caned same are cutique for we? tre Sincerely yours, Chick law C. Everett Koop, M.D. enclosure 6707 DEMOCRACY BOULEVARD, SUITE 107. BETHESDA. MD 20817-1129 (301) 493-6603 FAX (301) 493-8160 Adolescent Sexuality and Public Policy: A Liberal Response Lainie Friedman Ross University of Chicago, USA Abstract. Conflicting U.S. statutes exist governing adolescent sexuality. While parents are allowed to remove their children from sex education, they cannot prevent their children from procuring medical care and contraception without parental awareness or consent. I argue that specialized consent statutes-statutes which empower adolescents to seek confidential reproductive and sexual health care-are an inappropriate solution to adolescent sexuality because (1) they empower individuals whom we otherwise believe are not ready for autonomous decision-making; (2) they endorse deception, which is the wrong message to be sending to our children; and (3) they are illiberal in that they circumvent parental decision-making authority to promote a particular conception of the good life. I argue that we should rescind these statutes and return these decisions to the family. [Author Profile] Lainie Ross is Assistant Professor in the Department of Pediatrics and the MacLean Center for Clinical Medical Ethics at the University of Chicago. She is a practicing pediatrician. In November 1995, she successfully defended a dissertation entitled "Health Care Decision Making for Children," and will receive a Ph.D. in Philosophy from Yale University in May 1996. Her main interests are pediatric ethics and ethical issues in genetics. Correspondence should be addressed to Lainie Friedman Ross, M.D., University of Chicago School of Medicine, MacLean Center for Clinical Medical Ethics MC 1057, 5841 S. Maryland Ave., Chicago, IL 60637, USA (E-mail: [email protected]). Acknowledgments. I thank Walter Glannon, Ann Dudley Goldblatt, Robert E. Merrill, Jeffrey Oak, Mary Mahowald, Leslie Moore, Jacqueline Peterson, Julie Rothstein, John Ross, David Schmidtz, Sara Swenson, and Joanna Zolkowski-Wynne for reading earlier drafts of this paper. I also thank three referees for Politics and the Life Sciences for their thoughtful comments. Editor's note: Commentaries and a response by the author will appear in the August 1996 issue of PLS. There is a contradiction between the purported acceptance of diverse lifestyles-by our liberal community¹ and present-day U.S. policy regarding contraceptives for minors.² In a liberal community, it is presupposed that adults have a special insight into their own conception of the good life that they can pass on to their children. Yet, recent legislation and court decisions in the United States usurp parental power on health care issues pertaining to adolescent sexuality and reproduction. Consider the following scenario: The Joneses are devout Catholics. Their third daughter, Jane, is 14 years old. Jane, who has become sexually active with her 18-year-old boyfriend Eric, asks her pediatrician for prescription-requiring oral contraceptives. Jane knows that her parents disapprove of premarital sexual activity, and that birth control is strictly prohibited by their religion. Genuine respect for different values would require that we respect the Jones's decision to raise their daughters according to strict Catholic doctrine. They have simplified this for us by enrolling Jane in a Catholic parochial school that does not teach the students about human sexuality, birth control, and abortion. We cannot argue that the parents' strict prohibition against premarital sexual activity and sex education is a form of neglect. On the contrary, the Joneses are offering their children a coherent, viable lifestyle-a lifestyle that they believe would be threatened by such education outside the context of marriage. And yet, the Joneses cannot fully shelter their daughters because sexuality is pervasive in the mass media and literature. The Joneses recognize this risk, and expend much energy in monitoring their children's exposure to television programs and movies that address sexuality. Nevertheless, if Jane is truly bent on obtaining the facts about human sexuality, she can go to the public library! A liberal community is and must be tolerant of various lifestyles. As such, our laws allow parents to remove their children from sex education in the public schools, as well as to send their children to private schools in which sexuality is either intentionally omitted from the curriculum or, if addressed, taught as a moral and not a biological issue. And yet most states also have specific statutes (specialized consent statutes) that allow Jane and her pediatrician to discuss contraceptives and allow for Jane to be given a prescription for birth control pills-all without parental consent, even without parental notification. That the laws are inconsistent in the way that they respect various lifestyles is not surprising: different policies were set by different people with different agenda. Although Jane Jones is a hypothetical person, realize that patients like Jane are relatively common in pediatrics. And realize that Jane may come to my office alone, or she may come with a parent under some pretense (e.g., back pain) and then announce her real intention (her desire for oral 2 contraceptives) when her parent leaves the room. In this article, I consider-both from the private doctor-patient relationship and from the public context of the larger liberal community-whether specialized consent statutes are a moral response to Jane and her parents.³ Specialized Consent Statutes In a liberal community, parents have the legal right to raise their children according to their own values, and to make major educational, religious, and social decisions for them. Within the context of health care, parents in a liberal community are presumed to be the child's proxy voice for minor as well as serious conditions.⁴ In general, physicians can neither examine nor treat a child without parental consent; if they do, they can be charged with battery and assault. There are two important exceptions. First, physicians can treat a child when a life-threatening emergency exists even if parents are unable or unwilling to give their consent. Second, the state does not require parental permission if it has a substantial compelling interest, such as with universal vaccinations (which it can actually require for all citizens, both children and adults-Jacobson V. Massachusetts, 1905). Nevertheless, all fifty states have specialized consent statutes that-although varying in scope- give adolescents some autonomy to seek and consent independently to the diagnosis and treatment of drug and alcohol abuse, contraceptive counseling, and/or the procurement of contraceptives (Holder, 1985). Some states even allow minors to consent to abortions without disclosure or consent from their parents. The statutes were designed to encourage adolescents to seek health care for problems that they might deny, ignore, or delay if they had to get parental permission. The purported purpose of the specialized consent statutes is laudable: to encourage early, responsible sexual health care for adolescents. But the empirical data do not support the claim that adolescents will seek medical care for sexual and reproductive issues if they are assured complete confidentiality. Despite the inception of the specialized consent statutes in the 1960s, adolescent pregnancy and sexually transmitted diseases (STDs) are on the rise.⁵ And the data suggest that most adolescents (especially those younger than 16 years) do discuss these issues with their parents.⁶ Is this a case in which a few "bad" cases have produced "bad" laws? That is, were the specialized consent statutes written to protect the rare adolescent whose parents might harm or threaten to harm her were they to learn that she had a sexually transmitted disease or that she went to a physician for birth control? Were the statutes written without concern for the vast majority of 3 parents who are both able and willing to guide their adolescents' medical care and who consider this role integral to their child-rearing rights and responsibilities? I am deeply troubled by specialized consent statutes and believe they are an inappropriate. response by a liberal government. A liberal community must accommodate families that hold a wide spectrum of attitudes toward sexuality, and it must realize that these families may seek to structure the experience of their children according to these values. A truly liberal community would allow the Joneses to prevent Jane from procuring all contraceptives and from aborting a fetus, if conceived. But we do not want adolescents having children. So we allow adolescents to get birth control because we agree with them that they are not ready to be parents, and we are willing to override their parents' role as medical decision-makers in order to prevent what we perceive to be a greater tragedy. That is, the specialized consent statutes support those particular conceptions of the good life that approve-- or at least condone-responsible adolescent sexual activity. These statutes allow sexually active adolescents to circumvent parents who belong to subcommunities that discourage or forbid premarital sexual activity by their members. These statutes, then, circumvent parental decision-making authority without parental awareness of being excluded. To minimize adolescent pregnancy, the specialized consent statutes, allow, if not require, Jane's physician to collude with Jane if she insists upon deceiving her parents.⁷ This collusion leads to multiple moral difficulties. First, as Jane's pediatrician, I have developed relationships of trust with both Jane and her parents. What happens when Jane's parents discover the birth control pills? If they confront me and Jane, there is nothing to say but that I believed it was in Jane's best interest. But I have lost their trust, and rightly so. I have also made it clear that I do not respect their religious beliefs; and, since the law stands behind me, my action suggests that members of the larger community also do not respect their religious beliefs. Second, what happens if Jane has a medical complication? A sexually transmitted disease that leaves her infertile? Or an uncommon but serious medical complication from the pill, such as a stroke? How do I explain to Jane's parents that Jane understood and consented to these risks, and that she and I believed that their consent was unnecessary and undesirable, even though they are the parties who will remain responsible for the physical, emotional, and economic hardships that result? And third, what does this mean for Jane herself? She has learned that a physician, an authority figure, is willing to serve as an accomplice in deceiving her parents. What are we teaching our adolescents when they find persons in authority willing to help them deceive their parents? What does it teach these adolescents with regard to the respect owed to any adult, least of all a deceitful doctor or a duped parent? 4 There is more to our illiberal policy. As the health care system now stands, our classic suburban middle-class adolescent would find it difficult to go to a doctor without her parents knowledge. The visit is expensive, and to maintain absolute secrecy, the insurance company cannot be billed. Even if the doctor agrees to see the adolescent free of charge, a month's supply of oral contraceptives costs $15-25. And then the nondriving suburban adolescent must get to the doctor's office, which is not accessible by public transportation. In effect, then, the law gives increased confidential access to oral contraceptives only to poor adolescents who live in inner cities, who can go to a hospital clinic, and who can get free care and medicine with their state Medicaid card. So the policy tends to disproportionately disempower welfare parents who are already politically impotent. I wonder whether the laws would be overturned if physicians were treating large numbers of children whose parents had more political clout? The Failure of Arguments for Specialized Consent Those who support the specialized consent statutes offer several pragmatic and moral justifications. The first pragmatic position is compelling: Given the fact that adolescents can be and frequently are sexually active even when birth control and other sexual health services are relatively inaccessible, they should be given the opportunity to be responsible for their sexual activity. The pragmatist does not need to concede or refute whether the availability of such services increases the number of sexually active adolescents. Rather, he or she must argue only that the number is sufficiently large, even when such services are unavailable, as to portend a public health crisis. I accept the pragmatist's position thus far. But the argument makes two assumptions that must be fleshed out: (1) that adolescents are competent to make health care decisions, and (2) that a policy that grants adolescents autonomy will achieve greater sexual responsibility than would a policy that requires parental involvement. Consider if the two assumptions are false. If the first assumption is false-that is, if adolescents are not competent to make health care decisions-then the statutes are misdirected. If adolescents are incapable of giving informed consent in the area of sexual and reproductive health services, then the statutes unfairly hold them responsible for such measures. If the second assumption is false-that is, if granting autonomy to adolescents does not produce greater sexual responsibility-then the argument for extending autonomy fails. Since parents have presumptive responsibility for their minor children, even if the children are competent, legislation should override the parents' responsibility only if it can 5 be shown that the policies will promote adolescent well-being significantly better than a policy based on parental responsibility. The state should not override parental authority on any issue in which the state is only slightly more effective than parents unless the state is able and willing to take responsibility for the myriad of other concerns of its adolescent citizens; otherwise, state intervention inadvertently risks undermining parental authority in other realms-realms in which we both need and want enduring parental commitment. Thus, unless granting adolescent autonomy will promote significantly better sexual and reproductive health care for adolescents, the state must defer to parental authority. Is the first assumption valid? Are adolescents competent to make health care decisions? The data support the claim that adolescents make decisions as competently as adults do in medical case scenarios designed by psychologists (see Grisso and Vierling, 1978; Weithorn and Campbell, 1982). But does this competency necessarily apply to actions in real life? Despite their knowledge regarding auto safety, adolescents account for a disproportionate number of fatal car accidents. And despite their ability to repeat the facts about the transmission of AIDS and other sexually transmitted diseases, adolescents tend to overlook long-term consequences. The result is that adolescents are quickly becoming a high-risk group for sexually transmitted diseases, including AIDS (DiClemente, 1993). Thus, if competency is understood as the ability both to choose and to act to promote one's own interests, then the claim that adolescents are competent is not persuasive. The second assumption-that specialized consent statutes will promote significantly better health care for adolescents in the realm of sexual and reproductive services than if adolescents required parental involvement-is also unpersuasive. Despite the confidentiality assured by specialized consent statutes, adolescents typically delay seeking sexual and reproductive health care for almost one year after they become sexually active (American Academy of Pediatrics, 1990, citing Zabin and Clark, 1981). Of course, if parental involvement would cause adolescents to delay such services indefinitely, then the statutes achieve significantly better results. Proponents of these statutes need to present empirical evidence that adolescents will seek earlier and better care if they are assured complete confidentiality. Since such data do not exist, the presumption ought to be in favor of parental involvement. A second pragmatic reason to favor adolescent autonomy in sexual and reproductive health care is the concern of domestic violence. The position is that some adolescents seek sexual and reproductive health care without parental knowledge because these adolescents fear potential parental abuse. They fear physical or emotional abuse if their parents were to find out that they are sexually 6 active. But many of these adolescents who claim to fear such parental actions have never been abused. That is, they believe that their parents would be so outraged that they would harm them even when their parents have never harmed them previously. There are no data to support their fears.. Should the law be written to deal with the few potentially unfortunate cases? I would prefer legislation that included parents in procreative decisions for their sexually active children through the age of emancipation. In the rare event that a parent becomes abusive, I would dispose of this case to the system that deals with abused and neglected children. A third pragmatic reason to support adolescent autonomy is that this position avoids conflict. Some adolescents want to act without their parents' consent because they know that their parents' religious convictions condemn premarital sexual activity and birth control. But why do we permit these adolescents to seek medical help when we do not allow them to get sex education against their parents' beliefs? That is, if parents can remove their children from sex education classes because we supposedly respect their traditional lifestyle, then why do we allow physicians to go behind their backs and prescribe birth control to their daughters? And would anyone suggest that, to avoid conflict, we should not tell parents when their adolescents are failing in school? Surely, poor grades are common and are a major cause of intrafamilial strife. The pragmatic arguments are weak at best. The empirical data that presently exist do not justify the policy. The moral argument in support of the specialized consent statutes is based on the moral claim that competency should entail autonomy. This claim is the prevailing moral justification for denying physicians the right to act paternalistically towards competent adult patients. However, whether competency is necessary and sufficient to give children the right to make autonomous decisions is more ambiguous. The argument ignores the fact that parents are responsible, not only for responding to the child's current identity, needs, and interests, but also for shaping the child's future identity, needs, and interests. Granting autonomy to competent children should serve both their current selves and their future identities. Parents must be able to justify restricting a child's present-day autonomy in order to enhance his or her overall or long-term autonomy. I will return to this point below. The moral argument that competency should entail autonomy depends on two assumptions: (1) that the competency of children is not morally different from the competency of adults, and therefore that competent children and competent adults should be treated similarly; and (2) that competency is necessary and sufficient to justify autonomy. Both of these claims can be refuted. Let us consider the first assumption. There is a large and growing movement that claims that competent children should not be treated differently from their competent adult counterparts. These 7 advocates are known as child liberationists, and they are found in both academic circles (see, for example, Cohen, 1980; Harris, 1982) and the White House (see Rodham, 1973, 1979). Child liberationists differ on when children should be emancipated, depending on how they define competency. One group uses a minimum rationality test: as long as an individual has some minimal capacity to get what she wants, she should be deemed competent to make her own decisions. A second group uses a thicker notion of competency that includes the ability to make informed, intelligent, and voluntary decisions that can take into account both short-term and evolving long-term interests. Laura Purdy offers a compelling argument on why competent children should not be treated the same as their competent adult counterparts. First, she rejects the minimal competency argument on the grounds that society should not use a least common denominator as its standard for competency: Even liberationists, after all, lament the mistakes and immorality of adults. It seems to me that instead of asserting children's right to be equally silly and weak, it would be at least as plausible to argue for the overriding importance of helping children develop the self-control and other enabling virtues necessary for living more satisfying and moral lives. (Purdy, 1992:78) Purdy is in favor of granting all competent adults, even minimally competent adults, the right to self- determination on the grounds that the right to make autonomous decisions has intrinsic value. Even if a minimally competent adult might benefit from guidance, the intrinsic value of acting autonomously often outweighs the benefits of guidance. Children, on the other hand, have a great potential for improving their capacity to make decisions that reflect their best interests, and therefore Purdy is willing to restrain present-day decision-making authority in order to enhance overall decision-making authority (Purdy, 1992:55-84). When children are competent according to the thicker notion of competency, Purdy is still willing to restrict their autonomy. Purdy argues that the knowledge and skills that individuals need for genuine autonomous choice are accumulated only gradually and are developed, in part, by practicing these skills in areas of lesser import (e.g., young children should be free to choose between equally nutritious cereals). Purdy maintains that children, by contrast with their adult counterparts, have a great potential for improving their knowledge base and their skills of critical reflection and self-control. By adulthood, however, most individuals will have developed the skills and obtained the necessary background knowledge to use their autonomy to achieve their own goals, and those who have not are not likely to benefit from a longer training period. Thus, at some point an individual must be allowed to live her own life, provided that she has attained some minimal level of competency (Purdy, 1992).9 For children, on the other hand, we can and should aspire to higher goals. 8 The second assumption holds that competency is necessary and sufficient to justify autonomy. I believe, for two reasons, that competency is necessary but not sufficient. First, granting autonomy to children may actually be autonomy-restricting over a lifetime, and so we can justify restricting a child's autonomy now to give her greater overall autonomy. An example helps to clarify this point. If Jane enjoys great sexual freedom now, she may suffer several cases of pelvic inflammatory disease, which may cause her to be infertile. This condition may prevent Jane from becoming a parent when she is psychologically prepared to do so. Or she may contract an incurable sexual disease (preferably herpes and not AIDS) that will limit her sexual expression as an adult. Both of these conditions, then, have long-term consequences to which Jane may not give adequate attention during her adolescent years. Thus, we can justify withholding autonomy from adolescents in the short run in order to promote their potential for greater lifetime autonomy in the long run. Second, I favor continued proxy decision-making authority by the adolescent's parents on the ground that her parents have a valid third-party interest in her development and activities, even after she has achieved a significant level of competency. In general, parental decision-making authority serves both the children and the parents. It serves the needs and interests of the child to have autonomous parents who will help her to become an autonomous individual capable of devising and implementing her own unique life plan. It also serves the adults' interests in having and raising a family according to their own vision of the good life. This freedom does not automatically stop when the child becomes competent. If anything, parents then have the opportunity to try to inculcate their beliefs through rational discourse, instead of through example, bribery, or force. While children are still dependent upon their parents for emotional, economic, and material support, the parents' interest in their children must be balanced against the competent children's interest in acting autonomously. In contrast, the present-day specialized consent statutes give unilateral responsibility to adolescents who can still benefit from adult guidance, and thus deny the parents' enduring interest in educating and guiding their competent children according to their own values. For Rescinding Specialized Consent Statutes There are several reasons why we ought to rescind specialized consent statutes. First, these statutes send adolescents the wrong message. They teach adolescents that their decisions regarding sexuality are unrelated to other aspects of their lives. Consider that parents dictate what schools and church their children attend and the activities in which their children may participate, but these same 9 children have legal sanction to ignore parental discretion in the area of sexuality. Consider that these children cannot consent to a throat culture without parental permission,10 but they can authorize their physicians to perform a pelvic examination. Second, specialized consent statutes affirm the adolescents' attitude that their sexuality is solely a private matter. It is not. Adolescent sexual activity has numerous public consequences for which adolescents are ill-prepared to accept responsibility. Adolescents have a responsibility to themselves to delay sexual gratification until they are emotionally and psychologically prepared; they have a responsibility to their partners to practice safe sex; and, finally, they have a responsibility to their community to avoid parenthood until they are both emotionally and financially capable of caring for a child. Third, our laws give parents decision-making authority for their children because parents are best situated to decide and to act upon what is in their children's best interest, and because parents are financially and socially responsible for them. This is, or ought to be, no less true of their medical care with regard to sexual health issues. In arguing against specialized consent statutes, I do not deny the need for a public commitment to prevent and treat the unwanted consequences of adolescent sexual activity. In that vein, specialized consent statutes are on the mark: they affirm the community's belief that the cost of unwanted adolescent pregnancy and untreated sexually transmitted diseases is too high. But the implementation of these statutes entails moral hurdles for the ethical physician: collusion against parents, disrespect for parental conceptions of the good, and a disregard for the adolescent's need for further parental guidance. I am committed to the prevention and treatment of the unwanted consequences of adolescent sexual activity, but I want parents involved in their adolescents' care. When parents are involved, I am able to call the house to discuss laboratory results instead of asking my nurse to pretend to be a classmate and see if the adolescent is available. Similarly, when the parents are not excluded I am able to call the house if an adolescent fails to follow up for her reevaluation after treatment for a sexually transmitted disease. Follow-up is improved when parents are involved because both the parents and the child are looking out for the adolescent's welfare. Parents have a responsibility for the well-being of their children, and they can fulfill that responsibility only if they are aware of their children's needs.¹¹ A serious objection to rescinding the specialized consent statutes and requiring parental authorization for prescription-requiring contraceptives is that it is unrealistic: the result is a pregnant 10 adolescent (and we all know what we think of this option). But the fact is that over one million adolescents become pregnant yearly-and most of these adolescents are unmarried and their pregnancies are unplanned-which suggests to me that the present statutes are not working. A pediatric colleague suggested that I was missing the point.¹² She argued that adolescents get pregnant for many reasons, and not necessarily by mistake. Some hope that a child will strengthen relationships with their boyfriends; some seek legal emancipation from their parents; and others seek a child who will love them unconditionally. She argued that these "selfish" reasons were no less true of adult women. She asked why I condemned one and not the other. My response is liberal in the classic sense of the term: I do not believe it is my prerogative, nor the prerogative of the liberal community, to decide what is or is not a good reason for having children. However, I do believe that the right to procreate entails responsibilities. Is an adolescent as capable as an adult woman of coping with the emotional, physical, social, and financial costs of a child? The data suggest she is not. For example, adolescent parents are less likely to graduate from high school, which involves significant social and financial costs. But even more worrisome is the impact on their children. Children of adolescent parents often have more behavior problems and are at greater risk for significant morbidity and mortality from accidents. In the long term, they are more likely to be high school dropouts, adolescent delinquents, as well as adolescent parents themselves (Juszczak, 1992). Presently an adolescent mother is legally emancipated from parental authority and accountability. These adolescent mothers are legally allowed to leave home, get their own apartments, drop out of school, and receive welfare. And they will get additional state support by having a second child. What would the consequences be if adolescent motherhood did not emancipate Jane, but instead legislation held Jane's parents accountable for their grandchild until their own daughter was old enough for emancipation? Or should the Joneses be unwilling to care for their granddaughter, what if the child were to be placed in foster care until her mother was able to take care of her? Would this serve as a deterrent to adolescent pregnancy? My goal is not to penalize adolescents who unwittingly become parents, but to discourage adolescents from viewing parenthood as a means to early independence. I would like to help adolescent parents learn the skills that they will need to care for themselves and their children. They need parenting skills as well as vocational skills. And this requires more, not less, schooling; more, not less, adult guidance.¹³ I told my pediatric colleague that it is she who is missing the point. The liberal community must not be neutral with respect to adolescent pregnancy and parenthood. We must reemphasize the 11 emotional, physical, and yes, the financial obligations of parenthood. Adolescent xual activity and pregnancy are not just private moral decisions, and neither physicians nor the community at large should act as if they were. As a pediatrician, I should not pretend that Jane's pregnancy has positive aspects in addition to the negative. Jane, her parents, and I should all anguish over how to deal with this most unfortunate consequence of her sexual activity. Another objection to rescinding specialized consent statutes is the greater negative impact such action would have on adolescent females versus adolescent males. It was pointed out to me that this article claims be about adolescents, but it is really only about female adolescents. 14 According to this objection, the specialized consent statutes are a part of the whole package that ensures all women the right to procreative freedom and control over their own bodies. To rescind specialized consent statutes would be to diminish women's autonomy in the sexual and reproductive arenas. This argument fails because it is over-inclusive. Nothing in my proposal detracts from the sexual and reproductive rights that must be guaranteed to all adult women. I believe that adult women must have full control over their own bodies-and such empowerment entails public support for family planning clinics, pregnancy-related services including abortion services and prenatal care, rape-counseling programs, and public clinics that treat sexually transmitted diseases and counsel patients regarding HIV. But this commitment does not prevent me from distinguishing between adult women and female adolescents. The independent minor will still be protected under the emancipated minor statutes. My position is only that adolescents who live at home with their families must involve their families in their health care. I mean no harm to either female or male adolescents by urging rescission of specialized consent statutes. In general, females need more sexual and reproductive health care than males, but that reality involves responsibility as well as privilege, for only females have the capacity to conceive and bear a child. That this biological fact gives female adolescents less sexual freedom as children (and as ac Its, at least in our contemporary culture) is surely outweighed by the fact that these same individuals have greater reproductive opportunities as adults. 15 Public Policy Implications Given my great respect for parental autonomy and family privacy, I favor existing policy that allows parents to remove their children from sex education courses, but I also favor rescinding specialized consent statutes. Sexuality and sexual expression are private matters to be decided upon 12 by individuals and their intimates, and not to be imposed by the state. This position does not mean that I would encourage parents to exclude their children from sex education classes: liberal institutions other than the family share responsibility for educating our youths. But parents have the right and responsibility to select the means and scope of those other institutions' teachings. Since I accept the liberal position that adolescent pregnancy and adolescent parenthood are public crises, how can I justify my policy proposals? Morally, I believe that parents should be allowed to remove their children from sex education courses that conflict with their moral beliefs-it is the responsibility and prerogative of parents to teach their children their own values, including their values on sexuality. Parents play a leading role in the formation of their children's sexual identity, their sexual attitudes and mores, and the manner in which they give their sexuality expression. Pragmatically, I would also add, sex education has not worked. Sex education has not been shown to change risky behavior (see, for example, Cromer and Brown, 1992; Durbin et al., 1993; Ku, Sonenstein, and Pleck, 1992). I am also against prescribing birth control to Jane without parental notification because I am morally uncomfortable with the deceit that it entails. I respect Jane's parents' right to lead a more traditional lifestyle and to inculcate this lifestyle into their children. This is not to deny that Jane's parents have a responsibility to fulfill Jane's basic needs and interests and to help Jane develop into a mature autonomous adult. It is only to deny that her parents are obligated to expose her to a wide range of possible ways of life, or that they must permit her to participate in activities at odds with their moral conception of the good. On the contrary, if parents want to inculcate certain traditional lifestyles-be they Amish, Hasidic, or Catholic-then they need to restrict their children's exposure to their own ways of life. A truly liberal community must tolerate non-liberal but legitimate (i.e., non- abusive, non-neglectful) lifestyles. Unfortunately, some adolescents who are sexually active are unable or unwilling to discuss their decision with their parents. The public goal of preventing and treating the unwanted consequences of adolescent sexual activity applies to these adolescents as well. A liberal community can devise statutes that keep present-day over-the-counter birth control easily accessible to all individuals, even minors. And, in fact, the Supreme Court held in Carey V. Population Service International (1977) that state laws restricting the availability of over-the-counter contraceptives to minors were unconstitutional. I concur with the Court's decision. How can I justify allowing adolescents to obtain non-prescription birth control without parental notification and yet advocate parental consent for prescription-requiring contraception? To a great 13 extent my response is pragmatic: a policy that makes over-the-counter birth control easily accessible to all individuals, even minors, is neither an attempt to override parental moral values nor a statement condoning adolescent sexual activity. Rather, the decision to have barrier method birth control . available to all adolescents is consequentialist: the costs of denying adolescent sexual activity are unwanted adolescent pregnancy and diseases, which are a larger community burden than we are willing to accept. But my response also has a deontological basis: the adolescent's procurement of over-the-counter contraceptives does not require deception by medical providers and does not entail that medical providers undermine parental authority. Some have argued that adolescents have a constitutional right to procure prescription-requiring contraception from family planning clinics without parental notification. The proponents base their position on the repeal of the "squeal rule." In 1970, Congress enacted Title X of the Public Health Service Act, which provided for voluntary family planning projects. In 1978, Title X was amended "to encourage family participation." The Department of Health and Human Services promulgated the "squeal rule" in 1981, which sought to require family planning projects that received federal funds to notify a minor's parents within ten days that she had been given contraceptives. I believe that this interpretation is misguided. In both court cases in which the "squeal rule" was struck down, it was overruled on the ground that the rule was inconsistent with congressional intent (State of New York V. Heckler, 1983; Planned Parenthood Federation of America V. Heckler, 1983). Neither decision discussed whether parental notification or parental consent requirements violated a minor's constitutional rights. 17 If family privacy and autonomy are the important ideals that the courts have claimed them to be,¹⁸ then we must respect the different lifestyles that different families promote. Conclusion Specialized consent statutes were designed to empower adolescents with respect to their sexual identity. But to do this, the statutes permit or even encourage adolescents to circumvent their parents and the guidance they might offer. These statutes also permit physicians to collude with these adolescents. I have argued that the statutes are inconsistent with the respect owed to parents within a liberal community. The liberal response to the unwanted consequences of adolescent sexual activity requires a set of policies consistent with liberal goals and values. I favor laws that allow parents to decide upon the nature of their children's sexual education and laws that require parental involvement 14 in the procurement of medical care pertaining to adolescent sexual activity. I also favor laws that allow sexually active adolescents who refuse to involve their parents to have access to over-dre- counter barrier methods of birth control. These latter laws enable adolescents to avoid the unwanted consequences of their decision without legitimizing disrespect for parental authority by other institutions. It is a liberal community's way of avoiding a lose-lose solution in a no-win situation. 15 Notes 1. By "liberal community" I refer to a political democracy in which there is limited government and institutional guarantees of basic rights and personal liberties. A liberal community can be either liberal or conservative, depending on where it places the boundaries between the public and private spheres. In general, we tend to think of family and domestic life as private and economic and political spheres as public. The distinction is not so clear-cut, as many feminists have shown (see, for example, Nicholson, 1986; Okin, 1989). Although the dichotomy is too rigid, the distinction is nevertheless important, as we tend to tolerate greater state supervision and intrusion in the public sphere. Whether a liberal community is liberal or conservative depends, in part, on the extent and type of state involvement it tolerates in the different spheres. 2. By "minors" I refer to all individuals under the age of 18, which is the current legal age of emancipation. The specific age at which emancipation should be granted is a political and not a moral question. I do not argue for any particular age. Rather, I believe that the age should be chosen by societal consensus, and may differ in different cultures and different epochs. My arguments are germane regardless of where the line is drawn. (I do favor line-drawing versus a case-by-case evaluation because I know of no value-free standards on which to judge individual cases.) 3. This article does not address the issue of abortion, nor should the reader extrapolate my position on the role of parental consent and/or notification from my arguments regarding contraception and the treatment of sexually transmitted diseases. Although I do not believe that a fetus is a moral person, the fetus does add further complexities to the public and private dimensions of adolescent sexual activity that require a separate analysis. I leave this project for another day. 4. By "parents" I refer to those adults who are intimately involved in their child's upbringing. That is, I use the term morally and not biologically. I would not respect the decision-making authority of uninvolved caretakers regardless of their genetic or gestational relationship to the child. In this hypothetical case, both of Jane's parents are responsible for her upbringing, and either parent can be the child's proxy voice. I thank Ann Dudley Goldblatt for asking me to clarify this point. 5. To be accurate, the increased number of pregnancies among adolescents today may be more a reflection of the larger number of adolescents who are sexually active than a rise in the rate of adolescent pregnancy (see DeAngelis et al., 1987). Regarding the data on STDs, see Washington, Sweet, and Shafer, 1987. 6. These data were culled from a variety of studies that were summarized and discussed by the Council on Scientific Affairs of the American Medical Association (1993). Of note, the council's emphasis was to show that other adolescents stated that they would avoid medical care if parental notification were required, but as the authors of a corollary article in the same issue of JAMA note: "what adolescents say they will do (i.e., regarding forgoing care) may be different from what they actually do" (Cheng et al., 1993:1406). 16 7. Technically, the statutes do not require physicians to deceive parents, because physicians are under no legal obligation to provide a specific service or treatment requested by a minor if it conflicts with their moral principles (Council on Long Range Planning and Development, 1990:1). Nevertheless, the point still stands that if the physician confidentially gives Jane-the prescription that she requests, then the physician effectively has colluded with Jane in deceiving her parents. 8. Purdy defines "enabling virtues" as "a certain class of skills, habits and goals that help us get what we want," which includes such traits as rationality, diligence, and the desire for excellence (Purdy, 1992:45). 9. Again, this is not to deny that adults can also improve their decision-making ability to better reflect their own interests, but only to acknowledge that at least part of the value of autonomy is in its use. That is, the capacity to make autonomous decisions is valued because it allows one to act according to one's own beliefs and judgments. It acknowledges that at some point an individual must stop preparing for an autonomous life and just live it. 10. I realize that this is also changing under the mature minor statutes which allow "mature" adolescents to consent to much of their own medical care (Sigman and O'Connor, 1991). Nevertheless, this freedom is not commonly sought when the issue is not sexual, reproductive, or psychiatric. Rather, in general, parents are an important influence in their children's decisions, and adolescents tend to seek their support and advice in most other matters (see Hendry et al., 1992). In addition, adolescents are often willing to conform to parental influence (see Scherer and Reppucci, 1988), particularly female adolescents (Gilligan, Lyons, and Hanmer, 1990). 11. In discussions with families regarding adolescent sexual activity, I have met a number of parents who have asked me to prescribe birth control for their children if their children request it, and then to respect. their children's confidentiality. Although they hope that their children will be able to discuss these intimate issues with them, they are more concerned with their child's well-being and the avoidance of unwanted consequences. The policy that I propose to replace the specialized consent statutes would in no way prevent parents from giving physicians such pre-approved authorization. 12. I thank Joanna Zolkowski-Wynne for pressing me on this point. 13. In no way do I mean to deny Eric's and his family's responsibility for his and Jane's child. I would endorse a policy that required Eric's financial support and encouraged his social participation. Men as well as women must be responsible for their sexuality. I have focused on the Joneses because I am Jane's pediatrician and I frequently do not know the young man and his family. 14. I thank Sarah Swenson and Leslie Moore for pressing me on this point. 15. Consider, for example, that the single or lesbian woman can procreate by artificial insemination, whereas paid surrogate mothers for single or gay men are often illegal. At the other end of the spectrum, the pregnant woman has the final right to decide whether to carry a 17 child to term. If abortion were illegal, this part of my argument would be weaker. 16. I thank Robert E. Merrill for insisting that I address this issue directly. 17. This legal issue is discussed by Mnookin and Weisberg, 1989 and Wardle, 1989. 18. See, for example, Meyer V. Nebraska, 1923; Pierce V. Society of Sisters, 1925; Wisconsin V. Yoder, 1972. 18 References American Academy of Pediatrics, Committee on Adolescence (1990). "Contraception and Adolescents." Pediatrics 86:134-38. Carey V. Population Service International (1977). 431 U.S. 678. Cheng, T., J.A. Savageau, A.L. Sattler, and T.G. DeWitt (1993). 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Heckler (1983). 712 F.2d 650. Purdy, L. (1992). In Their Best Interest: The Case Against Equal Rights for Children. New York: Cornell University Press. Rodham, H. (1973). "Children Under the Law." Harvard Educational Review 43:487-514. Rodham, H. (1979). "Children's Rights: A Legal Perspective." In P.A. Vardin and I.N. Brody (eds.), Children's Rights: Contemporary Perspectives. New York: Teachers College Press. Scherer, D.G. and N.D. Reppucci (1988). "Adolescents' Capacities to Provide Voluntary Informed Consent: The Effects of Parental Influence and Medical Dilemmas." Law and Human Behavior 12:123-41. Sigman, G.S. and C. O'Connor (1991). "Exploration for Physicians of the Mature Minor Doctrine." Journal of Pe diatrics 119:520-25. State of New York V. Heckler (1983). 719 F.2d 119. Wardle, L.D. (1989). "Parents' Rights vs. Minors' Rights Regarding the Provision of Contraceptives to Teenagers." Nebraska Law Review 68:216-60. Washington, A.E., R. Sweet, and M-A. Shafer (1987). 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