For 13 years the VHLFA and a number of other health advocacy groups, led by the Genetic Alliance and the Coalition for Genetic Fairness, have been working to get a bill through Congress to protect Americans from misuse of their genetic information.

This year for the first time the Genetic Information Nondiscrimination Act (GINA) was passed by both houses of Congress in the same session, paving the way for final passage of the bill. The President has committed to sign it into law.
GINA paves the way for the responsible use of genetic information while protecting against discrimination with respect to health insurance and employment.

“We are grateful for the bipartisan efforts of our sponsors in the Senate - Senators Edward Kennedy (D-MA) and Olympia Snowe (R-ME) as well as the tremendous support of Senator Michael Enzi (R-WY). They are our champions and are making history today,” said Sharon Terry, President and CEO of Genetic Alliance, and President of the Coalition. “Fears that genetic information could be misused hurts individuals, researchers, clinicians, and associated industries. Today, our fears have been addressed.”

The bill passed in the House of Representatives with a vote of 414-1, thanks in large part to the help of Rep. Louise Slaughter and Rep. Judy Biggert.

Marla Gilson, Director of the Washington Action Office of Hadassah, said, “Just 10 years ago, only 100 genetic tests existed. Today, that number has grown to over 1,000 and everyday these tests are helping diagnose thousands of health conditions. Given the Jewish community’s historical experiences with genetic issues, we worked hard to see that this bill was passed.”

The Coalition has worked for thirteen years toward the passage of legislation to eliminate the misuse of genetic information. Discrimination on the basis of genetic information had led individuals to shy away from genetic testing that could help them manage their health proactively. It also has caused many to opt out of clinical trials for fear that their genetic information would be used against them. This lack of participation has slowed the research and development of treatments and beneficial drugs.

“We now have a huge task ahead of us,” said Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University, “to make sure that doctors, researchers, and the public are aware of the new protections GINA provides.”

GINA 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 White House has signaled its willingness to sign GINA into law and a signing ceremony is expected shortly.
President Clinton signed an Executive Order in February 2000 providing this kind of protection to all federal workers except the military. Members of the military are still not protected, and are still subject to discriminatory actions.

The military routinely denies meical benefits based on genetic information. That policy was originally designed to keep people who knew they would become ill from using the military for free care, but it’s ended up affecting people very unfairly.

“You could be in the military and be a six-pack-a-day smoker, and if you come down with emphysema, ‘That’s OK. We’ve got you covered,’“ said Kathy Hudson, from Johns Hopkins. “But if you happen to have a disease where there is an identified genetic contribution, you are screwed.”

The upshot is that people in the armed services are discouraged by their doctors from taking genetic tests that could save their lives. After all, why get a test when the results could be used against you? It’s precisely that situation that anti-genetic discrimination laws are designed to prevent.

The Coalition for Genetic Fairness educates policymakers about the importance of legal protections for genetic information. VHLFA is a member of this Coalition.

As printed in the VHL Family Forum 16:2, May 2008. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.