Genetic Privacy Legislation

Health Insurance Portability and Accountability Act of 1996 (PL-104-191):
Curtails the right of group health insurers to limit coverage of new, apparently healthy employees because of "preexisting conditions." It also forbids insurers to apply the preexisting-condition rule to genetic information unless the person has been diagnosed with the illness. Takes effect in August 1997.
Clarification of the Americans with Disabilities Act of 1990 with regard to genetic information:
In 1995, the U.S. Equal Employment Opportunity Commission released official guidelines extending ADA protection to individuals who experience employment discrimination based on genetic information related to illness, disease, or other disorders.

Several bills on genetic privacy have been introduced into the 105th Congress. These include:

The Human Research Subjects Protection Act of 1997 (S.193):
Proposes to extend oversight by an institutional review board to all U.S. research involving human subjects. CONTACT: Hon. John Glenn; 503 Hart Senate Office Bldg.; Washington, DC 20510 (202/224-3353, Fax: -7983, caroline@cua3.csuohio.edu)
Genetic Information and Nondiscrimination in Health Insurance Act of 1997 (H.R.306):
Addresses the concern that test results could make health insurance more difficult or impossible to obtain. Would prohibit group health plans from denying, canceling, refusing to renew, or changing the terms, premiums, or conditions of coverage based on genetic information. CONTACT: Hon. Louise Slaughter; 2347 Rayburn House Office Bldg.; Washington, DC 20515 (202/225-3615, louiseny@hr.house.gov)
Genetic Confidentiality and Nondiscrimination Act of 1997 (S.422):
This more comprehensive bill attempts to regulate the use of genetic data by health insurers and employers, sets up a system by which the person who is the DNA sample's source exercises ongoing control over release of the data it yields, and offers a plan to oversee genetic research. CONTACT: Hon. Pete Domenici; 328 Dirksen Senate Office Bldg.; Washington, DC 20510 (202/224-6621, Fax: -7371, senator_domenici@domenici.senate.gov)