Genetic Information Nondiscrimination Act (GINA)

The Issue:

Fear of genetic discrimination was preventing individuals from accessing their genetic information despite advancing science. The same fear caused a chill in clinical trials, slowing the progress of research and development of potentially lifesaving treatments.

Legislation:

The Genetic Information Nondiscrimination Act (GINA) [H.R. 493/ S. 358]

Sponsors: Congresswomen Louise Slaughter (D-NY) and Judy Biggert (R-IL) [H.R. 493] and Senators Olympia Snowe (R-ME), Edward Kennedy (D-MA), and Mike Enzi (R-WY) [S. 358].

Cosponsors: House of Representatives and Senate

Legislation Overview:

This important legislation protects Americans from discrimination by health insurers or employers based on genetic information by:

• Prohibiting group health plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiums or contributions on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.


• Prohibiting issuers of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.


• Prohibiting employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment. Employers may not request, require or purchase genetic information, and may not disclose genetic information. Similar provisions apply to employment agencies and labor organizations.

The law’s health insurance provisions will take effect in May 2009. The employment provisions will take effect in November 2009.

If are facing genetic discrimination now, your state may have laws to protect you. You can learn about current state genetic discrimination protections for the workplace at: http://www.ncsl.org/programs/health/genetics/ndiscrim.htm and in health insurance at: http://www.ncsl.org/programs/health/genetics/ndishlth.htm.