Genetic Information Nondiscrimination Act (H.R.493, S. 358)

About This Legislation:

Fear of 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.

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.

Legislative Support:

The House bill was sponsored by Representative Louise Slaughter (D-NY 28th) and had 188 cosponsors including 123 Democrats and 65 Republicans. Senator Olympia Snowe (R-ME) sponsored the Senate bill which had 39 cosponsors including 29 Democrats, 2 Independents, and 8 Republicans.

Status:

The bill passed and is law. 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.