Laboratory News

Senate Votes 95-0 to Pass Historic Bill on Genetic Information Nondiscrimination

With a vote of 95-0, the Senate yesterday passed the Genetic Information Nondiscrimination Act, S. 358 (GINA). The objective of the GINA is to allow for responsible use of genetic information while protecting against discrimination with respect to health insurance and employment.

The Genetic Information Nondiscrimination Act now goes to the House-Senate conference committee where it will be reconciled with a mental health bill passed by the Senate last year. This version did not include GINA. Earlier this year, on March 5, 2008, the House passed a similar mental health bill that included GINA. The House vote was 268-148. The White House has indicated its willingness to sign the final GINA bill into law.

For the clinical laboratory industry, the remarkable consensus demonstrated by the Senate's 95-0 vote in favor of this legislation sends an unmistakable message: American consumers are concerned about keeping their genetic information private. It is seldom that politicians of all stripes unite in this fashion behind new legislation. The message for the laboratory profession is that it should be very cautious when providing genetic testing to patients.

"For the first time we act to prevent discrimination before it has taken firm hold and that's why this legislation is unique and groundbreaking," said Senator Olympia Snowe, R-Maine, who sponsored the Senate bill with Senators Ted Kennedy, D-Mass., and Mike Enzi, R-Wyo.  There are more than 1,100 genetic tests available today, observed Snowe, but these are "absolutely useless" if fear of discrimination discourages people from taking tests or participating in clinical trials.

According to a press release from The Coalition for Genetic Fairness, 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.

It should be noted that the Genetic Information and Nondiscrimination Act does not break much new ground. At least 35 states already have laws banning the use of genetic information to discriminate in employment. Up to 47 states have existing laws against using genetic information to discriminate in issuing health insurance. Further, current federal law already prohibits group health plans from discriminating against an individual based on genetic information.

Thus, what is more significant about this legislation is the willingness of every Senator that cast a vote to make a public statement that using genetic information to discriminate in the issuance of health insurance or by employers to discriminate in employment decisions will be against the law. This shows the extent at which fears about genetic testing and its consequences to individuals has grown across the nation. This knowledge should inform laboratory directors and pathologists as they develop genetic testing strategies for their labs and conduct compliance reviews of existing business and clinical practices.

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• Congress Near Deal on Genetic Test Bias Bill