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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. Physician Opinion on
teenagers: legal and ethical issues concerning con-
36. Cartoof VG, Klerman LV. Parental co
for
Health Care Issues: 1987. Chicago, Ill: American
sent and confidentiality. Youth Law News. 1985;4-
abortion: impact of the Massachusetts law. Am J
Medical Association; 1987.
5:22-24.
Public Health. 1986;76:397-440.
15. Novack D, Detering B, Arnold R, Forrow L,
25. Morrissey JM, Hofmann AD, Thrope JC. Con-
37. Gold RB. Abortion and Women's Health: A
Ladinsky M, Pezzullo JC. Physicians' attitudes to-
sent and Confidentiality in the Health Care of Chil-
Turning Point for America? New York, NY: The
ward using deception to resolve difficult ethical
dren and Adolescents: A Legal Guide. New York,
Alan Guttmacher Institute; 1990.
problems. JAMA. 1989;261:2980-2985.
NY: Free Press; 1986.
38. Greenberger MD, Connor K. Parental notice
16. Resnick MD, Litman TJ, Blum WR. Physician
26. Gittler J, Quigley-Rick M, Saks MJ. Adolescent
and consent for abortion: out of step with family law
attitudes toward confidentiality of treatment for
Health Care Decision-Making: The Law and Pub-
principles and policies. Fam Plann Perspect. 1991;
adolescence: findings from the Upper Midwest Re-
lic Policy. New York, NY: Carnegie Corp; 1990.
23:31-35.
gional Physician Survey. J Adolesc Health. 1992;
27. English A. Treating adolescents: legal and eth-
39. Rogers JL, Boruch RF, Stoms GB, DeMoya D.
13;616-622.
ical consideration. Med Clin North Am. 1990;74:
Impact of the Minnesota parental notification
17. House of Delegates. Family Planning. Chica-
1097-1112.
on abortion and birth. Am J Public Health.
go, III: American Medical Association; June 1971.
28. Center for Substance Abuse Prevention. Legal
81:294-298.
Report 82.
Issues for Alcohol and Other Drug Use Prevention
40. The Alan Guttmacher Institute. Teenage abor-
18. House of Delegates. 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.
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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
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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-
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1
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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.
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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
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