San Francisco

US President Bill Clinton announced on Monday that he plans to propose legislation to prevent health care companies from discriminating against consumers on the basis of genetic information. He said his bill would strengthen other legislative proposals, partly by adding sections that would not allow disclosure of genetic information unless the Secretary of Health and Human Services determined that this might support biomedical research.

Pledging his commitment to non-discrimination legislation, Clinton released an 11-page report from the Department of Health and Human Services. This concludes that current federal protective measures contain significant weaknesses concerning the denial of coverage by health plans of individuals, the setting of premiums, and the disclosure of information.

Also, although 19 states have protective measures against the misuse of genetic information by health insurers, most do not define such information sufficiently broadly to include family history, medical records and physical exams. And self-insured employers are exempt from such laws.

Unless laws specifically address the problem of misuse of genetic information, individuals will be afraid to obtain information that could be vital to their lives, the president said at a press conference. He was accompanied by Secretary of Health and Human Services Donna Shalala, who had flown in from Chicago fresh from delivering a speech on genetic discrimination to a convention held by Hadassah, a Zionist women's organization that emphasizes education and health care, and by Vice President Al Gore.

Clinton urged Congress to move quickly on his legislation, which would build on HR 306, a bill introduced by Congresswoman Louise Slaughter (Democrat, New York) to prohibit health plans from denying, refusing to renew, cancelling or changing the terms of a health insurance policy based on genetic information. Health plans would not be able to require genetic tests or to disclose genetic information to a third party.

The President's bill is intended to extend genetic information protective measures recently enacted under the Kassebaum-Kennedy health reform package to self-insured employers, uninsured workers, people switching jobs, and other groups. The Kassebaum-Kennedy law prohibits insurance companies from refusing health coverage based on a person's medical history, including genetic information. HR 306 also applies tax penalties to violators and allows individuals to sue their health plan for punitive damages if they feel that they have been discriminated against.

Members of Hadassah, the largest women's organization in the United States with 300,000 members, called such legislation vital. “There's been a clamouring for a commercially available test in our community, but when we started to become aware of the history of insurance discrimination on this issue, it had a chilling effect,” says Amy Rutkin, director of American affairs for Hadassah. The group has recruited co-sponsors for the bill and has urged its members to discuss their concern about discrimination in their communities.

HR 306 has 135 co-sponsors among legislators and 65 endorsing organizations, but has so far failed to make the commerce committee agenda. Olympia Snowe (Republican, Maine), is co-sponsoring the bill in the Senate, which also has been slow to move on it. One reason is that biotechnology and pharmaceutical industry executives are concerned that such legislation would excessively protect health databases from research usages and distinguish genetic information from other medical data.

Some, such as Paul Billings, chief medical officer at the Heart of Texas Veterans Integrated Service Network and an expert in genetic discrimination issues, see Clinton's statement as a watershed moment in US history by declaring that genetic discrimination in health matters is unlawful.

“We are recognizing how important an environment of non-discrimination is to maximizing the benefit of this technology,” says Billings.