The JSC is Pleased to Support the Genetic Information Nondiscrimination Act

The Joint Steering Committee for Public Policy (JSC) is pleased to announce its support of H.R. 493, the Genetic Information Nondiscrimination Act and calls on Congress to enact this important piece of legislation that prevents discrimination based on genetic information.

H.R. 493 seeks to protect individuals from discrimination in health insurance and employment on the basis of genetic information. H.R. 493 would prohibit employers from making hiring/firing and promotional decisions based on genetic information that shows a worker may contract a disease in the future. The bill would also prevent health plans from denying coverage or charging higher premiums on the basis of such genetic information.

With genetic tests available for almost 1,000 diseases today, and hundreds more under development, personal genetic data is becoming more commonplace. If genetic information is not safeguarded, it raises the potential for people with a genetic predisposition toward one or more diseases to be denied healthcare insurance, lose their job, or be denied employment altogether.

If we want to realize the potential of cutting-edge genetic technology, we need to make genetic testing commonplace, rather than something fearful. We need people to participate in clinical trials. But sadly, ongoing genetic discrimination is making men and women less likely to be tested. In a 2003 editorial, Dr. Francis Collins and James Watson clearly identified how lack of public participation in clinical trials will damage research into genetic disorders. They wrote: "Genetic discrimination has the potential to affect people’s lives in terms of jobs and insurance, but there is another dimension as well: It can slow the pace of the scientific discovery that will yield crucial medical advances. ... Without protections in place, individuals who do agree to participate [in studies] will represent a self-selected group that could skew research results, producing a negative impact on all of us who look to genetics to help find better ways of diagnosing, treating, and preventing disease."

President Bush has pledged his support of this legislation and promises to sign the bill if it passes in Congress. Genetic nondiscrimination bills have been introduced in both the House and the Senate. On Jan. 16, 2007, Representatives Louise Slaughter (D-NY) and Judy Biggert (D-IL) introduced H.R. 493, the Genetic Information Nondiscrimination Act of 2007 with 165 cosponsors. Senator Olympia Snowe (R-ME) introduced her bill on Jan. 22, 2007, with 23 cosponsors.