Legislative News

Legislation News

Legislative Activities

We are always in search of people who would like to get involved in advocacy for the HD cause. If you have suggestions on things we should be doing as an organization, or would like to help in any way with advocacy, call the help line at 612-371-0904.

To contact your representatives go to Write My Congressional Delegation

Genetic Nondiscrimination in Health Insurance and Employment Act

On May 21, 2008, President Bush signed the Genetic Information Nondiscrimination Act of 2008 (H.R. 493) into law following an overwhelming show of support for the bill in Congress. With a 95-0 vote in the Senate and a 414-1 vote in the House, GINA has been publicized by lawmakers as the first major civil rights act of the 21st Century.

The law will protect the privacy of millions of Americans, making it illegal for health insurance companies to use information from genetic tests to determine premiums or reject coverage as well as making it illegal for employers to reject job applicants or deny them a promotion on the basis their genetic information. The law also prohibits insurance companies and employers from requiring genetic tests. The protections created by the law will help encourage people affected by or at risk for a genetic disease more proactively manage their health and participate in genetic research without fear of discrimination.

It is important to note, however, that GINA will take effect in 12 months (on May 21, 2009) with respect to its health insurance protections and in 18 months (on November 21, 2009) for employment related protections. These are important dates to note if you or someone you know has had concerns about the misuse of their genetic information. Until the law takes effect, adverse insurance and employment decisions based on a person’s genetic information continue to be possible. We advise anyone interested in undergoing genetic testing to exercise caution. If you have specific questions about GINA or genetic discrimination, you can contact Sean Luis, HDSA’s Advocacy and Family Services Manager, for more information at sluis@hdsa.org or (800) 345-4372 extension 226.