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Genetic Discrimination
Overview of Genetic Discrimination
While most Americans are optimistic about the use of genetic information to
improve health, many are concerned that genetic information may be used by insurers
to deny, limit or cancel health insurance, and by employers to discriminate
in the workplace. They are worried that some insurers may choose not to insure
people who are healthy but genetically pre-disposed to future disease onset:
such people incur more health-related costs for the insurance company than individuals
who are not predisposed. Similarly, they fear that some employers might only
employ or retain individuals who are not pre-disposed to future disease onset,
since healthy individuals are more productive. Therefore, many lawmakers, scientists
and health advocacy groups believe that there is a need for federal legislation
to prevent genetic discrimination.
Legislation on Genetic Discrimination
- Genetic Information Nondiscrimination Act: 2008
Complete information about legislation from the 110th Congress on Genetic Nondiscrimination and NHGRI's legislative interest and involvement.
There are also a number of laws that give individuals some protection from genetic
discrimination. Forty-one states have enacted laws to protect the public from genetic discrimination by
insurance companies, and 32 states have laws protecting their citizens from
genetic discrimination in the workplace. In 2000, an Executive Order 13145 was
issued that prohibits genetic discrimination in the workplace for federal employees.
The Health Insurance Portability and Accountability Act of 1996 (HIPAA) [hhs.gov] also
provides some protection from discrimination. However, gaps remain. HIPAA does
not:
- Prohibit the use of genetic information as a basis for charging a group
more for health insurance.
- Limit the collection of genetic information by insurers and prohibit insurers
from requiring an individual to take a genetic test.
- Limit the disclosure of genetic information by insurers.
- Apply to individual health insurers except if covered by the portability
provision.
For over ten years, Congress has considered legislation to ensure comprehensive
protection for all Americans. The U.S. Senate passed the Genetic Information
Nondiscrimination Act of 2003 (S.1053) [thomas.loc.gov] in 2003 by a vote of 95-0, but
an identical bill was never introduced or passed in the House and the bill did
not become law. A similar Senate bill, the "Genetic Information Non-Discrimination
Act of 2005" (S.306), passed 98-0 in February 2005. Representatives Judy
Biggert (R-IL), Louise Slaughter (D-NY), Bob Ney (R-OH), and Anna Eshoo (D-CA)
introduced an identical bill H.R. 1227, in the House, on March 10, 2005. Currently
the bill is being considered by three House committees - the Committee on Education
and the Workforce, the Committee on Energy and Commerce, and the Committee on
Ways and Means.
- Existing Federal Anti-Discrimination Laws and How They Apply to Genetics
A summary of how the Americans with Disabilities Act, the Health Insurance
Portability and Accountability Act of 1996 and the Civil Rights Act apply
to genetics.
- Cases of Genetic Discrimination
Although there have been no genetic employment discrimination cases brought
before U.S. federal or state courts, the Equal Employment Opportunity Commission
has settled a lawsuit alleging this type of discrimination.
- Genetic Information Non-Discrimination Act of 2005 (S.306) [thomas.loc.gov]
- Genetic Information Non-Discrimination Act of 2005 (H.R.1227) [thomas.loc.gov]
- Statement
of White House support for S. 306
- Statement
of support from Michael Leavitt, Secretary of Health and Human Services, for
genetic nondiscrimination legislation
- Statement
of White House support for S. 1053
- Executive Order 13145 to Prohibit Discrimination in
Federal Employment Based on Genetic Information
- February 8, 2000, Comments, Former President Clinton
Former President Bill Clinton comments on Executive Order 13145.
- Search
the Legislative Database for State Legislation
- EEOC Policy
Guidance on Executive Order 13145 [eeoc.gov]
Prohibits discrimination in federal employment based on genetic information.
- Health Insurance Portability and
Accountability Act of 1996 (HIPAA) [hhs.gov]
Genetic Nondiscrimination Federal Legislation Archive
National Conference of State Legislatures (NCSL) Summaries
of State Genetics Laws
NHGRI Interest in Genetic NonDiscrimination Legislation
Concerns and Activities
Public fears about genetic discrimination mean that many individuals do not participate
in important biomedical research at the NIH. Many patients also refuse genetic
diagnostic tests that help doctors identify and treat diseases: they worry that
they will lose their health insurance if it is proven that they are genetically
pre-disposed to a disease. NHGRI believes that legislation that gives comprehensive
protection against all forms of genetic discrimination is necessary to ensure
that biomedical research continues to advance. Similarly, it believes that such
legislation is necessary so that patients are comfortable availing themselves
to genetic diagnostic tests.
NHGRI Policy Recommendations for Genetic Discrimination in Insurance or Employment
In the mid 1990s, the National Institutes of Health-Department of Energy (NIH-DOE)
Ethical, Legal and Social Implications (ELSI) Working Group and the National
Action Plan on Breast Cancer (NAPBC) [4woman.gov] cosponsored workshops on genetic discrimination
in health insurance and the workplace. The findings and recommendations of the
workshops were published in Science. They are the foundation for policy-making
in the Executive branch, and for legislation at both the state and federal level.
Reports On Genetic Discrimination
- An
Analysis from the Secretary's Advisory Committee on Genetics, Health and Society
- Secretary's
Advisory Comittee on Genetics, Health and Society [od.nih.gov]
A listing of reports and correspondence from the Secretary's Advisory Comittee
on Genetics, Health and Society (SACGHS), 2003-2004.
- Faces
of Genetic Discrimination: How Genetic Discrimination Affects Real People
[nationalpartnership.org]
A July 2004 report from the National Partnership for Women & Families
on behalf of the Coalition for Genetic Fairness.
- Genetic Information and the Workplace
A 1998 report by the Departments of Labor, Justice, Health and Human Services,
and the Equal Employment Opportunity Commission.
- Workshop on Genetic Discrimination and the Workplace:
Implications for Employment, Insurance and Privacy
A 1996 workshop report by the Joint Ethical, Legal, and Social Implications
Working Group and the National Action Plan on Breast Cancer.
- Workshop on Genetic Discrimination and Health Insurance
A 1995 workshop report by the Joint Ethical, Legal, and Social Implications
Working Group and the National Action Plan on Breast Cancer.
- Genetic Information and Health Insurance
A 1993 Report by the Insurance Task Force of the Ethical, Legal, and Social
Implications Program Working Group.
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Last Updated: April 28, 2008
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