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OCR Page 1 of 24GENETIC2.WPD
P
PREVENTING INSURANCE DISCRIMINATION BASED
ON GENETIC INFORMATION
Today the President pledged his commitment to enacting bipartisan legislation in
this Congress to prohibit health plans from inappropriately using genetic screening
information to deny coverage, set premiums, or to distribute confidential
information. In so doing, he released a new report from the Department of Health
and Human Services that summarizes the promise and perils of genetic screening.
He also announced that the Republican Chair of the Senate Labor and Human
Resources Committee, Senator Jim Jeffords, and the Public Health and Safety
Subcommittee Chair, Senator and Doctor Bill Frist, have indicated their support for
passing a bipartisan bill that is consistent with the goals and general
recommendations of the HHS report.
The Promise of Genetic Testing. Genetic testing has the potential to identify
hidden genetic disorders and spur early treatment. Tests for genetic predisposition
to certain diseases -- such as Huntington's disease and certain types of breast
cancer -- are already available and more such tests are on the horizon.
Genetic Discrimination: The Perils of This Progress. Genetic testing also can be
used by insurance companies and others to discriminate and stigmatize groups of
people. Studies have shown that:
Over one-fifth of people in families where someone has a genetic disorder
report that they, or a member of their family, had been discriminated against
by an insurance plan.
85 percent of Americans report that they are extremely concerned with the
possibility that their genetic makeup will be used to discriminate against
them or a member of their family.
Building on Kassebaum-Kennedy. The Kassebaum-Kennedy law took steps to
prohibit genetic discrimination by preventing insurers from using genetic information
as a "pre-existing condition" and denying or limiting coverage in group markets.
However, it does not: (1) prevent health plans in the individual market from denying
coverage on the basis of genetic information; (2) assure that premiums settings are
in no way based on genetic information; and (3) prevent health plans from
disclosing genetic information to insurers, to plan sponsors, and other entities
regulated by state insurance laws, such as life, disability, and long-term care
insurers.
State laws are insufficient. Although 19 states have already enacted laws to
restrict the use of genetic information in health insurance, state laws are
insufficient to solve this problem. First, employer sponsored self-insured health
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