Physicians urge protections against genetic discrimination
ACP policy to protect against work, insurance bias
The availability of genetic testing is expanding rapidly — so rapidly that information is available before there are safeguards in place concerning how it can be used. In recent months, home test kits, with which users are told they can determine genetic predisposition to bipolar disorders or determine paternity, have come on the market.
In an effort to describe the need for federal protections against discriminatory use of genetic information in the workplace and by insurers, a national physicians group has drafted a list of six policy positions it believes Congress should act on to protect Americans' genetic information.
"While they're not quite there, Congress does continue to move closer to passing federal legislation that protects the use of genetic information in employment and insurance coverage decisions," says David C. Dale, MD, FACP, president of the American College of Physicians (ACP), which issued the position monograph in March 2008.
A survey conducted in March 2007 by researchers at Johns Hopkins Genetics and Public Policy Center in Baltimore found that while most survey participants trust their physicians and genetic researchers with access to their genetic information, that trust does not extend to health insurers and employers.1 One-fourth of those surveyed said they don't trust health insurers not to misuse their genetic information by discriminating against them — limiting or denying insurance — if the insurers have the information.
The ACP defines "genetic information" as information about an individual's genetic tests; genetic tests of that individual's family members; or the manifestation of a disease or disorder in the family members of that individual.
A "genetic test," by ACP guidelines, is "an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes."
The six position points drafted by the ACP are:
Position 1: Insurance providers should be prohibited from using an individual's genetic information to deny or limit health coverage or establish eligibility, enrollment, or premium contribution requirements.
Position 2: Insurance providers should be prohibited from establishing differential premiums based on an individual's genetic information or request for genetic screening.
Position 3: Employers should be prohibited from using an individual's genetic information in employment decisions, such as hiring, promoting, or terminating an employee or establishing the terms, conditions, and benefits of employment.
Position 4: Insurers and employers should be prohibited from requiring individuals and families to undergo genetic testing.
Position 5: Insurers and employers should be prohibited from collecting and/or disclosing an individual or family's genetic information. Written and informed consent should be required for each disclosure of genetic information and should include to whom the disclosure is made.
Position 6: Congress should establish comprehensive and uniform federal protection against genetic discrimination that closes the gaps in protection due to varying state laws. Federal protection should also cover ERISA (Employee Retirement Income Security Act) health plans.
The entire 12-page policy monograph, "Establishing federal protections against genetic discrimination," is available on-line at www.acponline.org.
Reference
- Hudson KL. Prohibiting genetic discrimination. N Engl J Med 2007;356:2021-2023.
You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
- Award-winning Medical Content
- Latest Advances & Development in Medicine
- Unbiased Content