Act Now to Prevent Genetic Discrimination

By Susanne B. Haga and Huntington F. Willard
Wednesday, December 28, 2005

Cheers to IBM for its recent pledge to not use genetic information in its hiring practices or in deciding eligibility for health insurance coverage for its 300,000 employees. Yet the fact that IBM felt the need to take such action highlights the gap in federal legislation to adequately protect job candidates and employees from discrimination based on their personal genetic information. And will it be a bellwether for action on a national level?

At least 20 bills have been introduced in Congress to prohibit genetic discrimination in the past 10 years. Only one has passed, providing limited protection against genetic discrimination for the group health insurance market. National legislation to prohibit genetic discrimination by employers and health insurers is way overdue.

A prime example of the abuse of genetic information is a much-publicized $2.2 million settlement between Burlington Northern Santa Fe Railway Co. and the U.S. Equal Employment Opportunity Commission. The railway tested or sought testing for 36 unsuspecting employees in an attempt to establish that injury claims were due to genetic disease and not to work-related activities. The science here was shaky, but the surreptitious misuse was clear-cut.

The recent case involving former Chicago Bulls basketball player Eddy Curry and the team's request for DNA testing to diagnose a heart arrhythmia also highlights the interest in genetic information in making personnel decisions.

Testimony before a federal advisory committee on genetics, health and society last year revealed that citizens were avoiding or hiding test results because they might lose their health insurance. Do we want women with a family history of breast cancer deciding not to get tested out of fear of discrimination?

As more genetic tests are developed to help prevent disease or enable early detection, protections against the potential misuse of genetic information become ever more important. Employers may decide not to hire someone based on his or her genetic predisposition to diseases such as cancer or heart disease. Or an insurer may raise premiums or decline coverage for individuals with a high risk of disease or disability based on genetic differences. The enactment of national legislation to protect all individuals from genetic discrimination will not just benefit a select few who are affected with a genetic disease. All of us have genetic miscues in our genomes that may one day lead to disease. Given all of the bills introduced over the last 10 years, what is the hang-up in passing this legislation? Most politicians support the legislation, as evidenced by the Senate vote on the most recent bill -- 98 to 0. And the president has indicated his willingness to sign such legislation. Ironically, groups that represent employers have voiced concerns that this bill addresses a problem that doesn't exist and creates a new cause of action against employers. Therefore, the announcement by IBM comes both as a surprise and a welcome vote of confidence that businesses can survive without peering into the genomes of potential and current employees.

In the absence of national protections, most states have passed legislation to prohibit or limit the use of genetic information for risk selection and risk classification for health insurance or employment purposes. However, the scope of protections varies by state. The only other employer known to offer protection from genetic discrimination is the federal government; in 2000, an executive order was signed by President Clinton providing protection for 2.7 million federal employees. If the move by IBM instigates more employers to develop their own policies on the use of genetic information, this will result in a messy patchwork of company policies on top of inconsistent state laws.

Regardless of how widespread genetic discrimination practices are, the fear of discrimination could cripple important genetic-related technologies before they are introduced. Fear drives policy, as evidenced by the anxiety surrounding genetically modified organisms in Europe. Without national protections, individuals may decline to participate in genetic research studies or may compromise their health by refusing testing of their genomes, thereby halting the field and promise of genetics. This is why IBM's action provides a model for Congress. Let's not squander the promises of genetics by failing to protect our citizens from discrimination.

Susanne B. Haga is senior policy analyst for the Institute for Genome Sciences and Policy at Duke University. Huntington F. Willard is director of the institute.

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