The American College of Physicians (ACP), the nation's largest medical specialty organization, has just released a policy monograph which offers six positions on the issue of genetic discrimination. ACP has emphasized that there is a need for specific federal protection from genetic discrimination in the forums of employment and insurance coverage.

David C. Dale, M.D., ACP president, stated that the government is closer to enacting protective legislation addressing the use of genetic information, but more work needs to be done. The monograph highlights concerns that increasing availability and advances in genetic testing may lead to employers and insurance companies misusing an individual's genetic information if such entities gain access to it. Over 60% of the public believe insurers and employers would actually misuse genetic information. The fear of misuse and discrimination has created some negative impact in patients refusing genetic tests, and disguising or shielding information. Patients then face potential harm from lack of therapeutic and preventative care for rare genetic conditions. In addition, advances in the medical research community at large may suffer from limited patient participation in genetic studies.

While the Health Insurance Portability and Accountability Act of 1996 (HIPAA) provides some general protection of genetic information, the ACP states that the protection is not extensive enough. As example, HIPAA does not prohibit larger group premiums if one group member has tested positive for a genetic disorder. HIPAA also does not prohibit genetic test requirements or limit disclosure and use of genetic information by insurers.
The ACP's positions primarily analyze insurance policies and practices. The monograph's first position states that insurance providers should not use genetic information to deny or limit health coverage, insurance eligibility, enrollment or premium contributions. The second position states that insurance companies should not be allowed to establish premiums based upon genetic information, or to request an individual undergo genetic screening.

The third position states that employers should be prohibited from discriminating against an individual in employment decisions (hiring, promoting, terminated, etc.) based upon genetic information.

The fourth and fifth position emphasize that both insurers and employers be prevented from requiring genetic testing of individuals and families, and from collecting or disclosing individual and family genetic information.

The final ACP position addresses Congress, suggesting Congress enact "comprehensive and uniform" protection that covers gaps existing in current state laws. The legislative protection should also cover ERISA plans.

More information available at: http://www.acponline.org/advocacy/where_we_stand/policy/gen_dis.pdf

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