Could Genetic Discrimination Cost You Your Job?
July 20, 2000 (Washington) -- Should the measure of an employee be his genes or his job performance? The question was raised before a U.S. Senate committee Thursday looking into fears of genetic discrimination in the workplace. The concern has been discussed for years but has taken on greater prominence since scientists announced they've completed a rough draft of the human genome last month.
As the ability to predict who will get inherited diseases accelerates in the coming decades, might that kind of information become the basis for promotion or even dismissal?
"The problem of genetic discrimination in the workplace while currently affecting relatively few Americans will grow rapidly unless something is done," Francis Collins, MD, PhD, director of the National Human Genome Research Institute, told a panel of the Senate Health, Education, Labor and Pensions Committee. Collins led the federally funded effort to map the 3.2 billion bits of information in the genetic code.
There are already laws on the books covering genetic discrimination in insurance. The Health Insurance Portability and Accountability Act says individuals can buy insurance no matter what their health status. In addition, twenty-three states already prohibit bias in the workplace based on genetic make up.
The Americans With Disabilities Act (ADA) is another shield against workplace discrimination, but it may or may not prevail in cases regarding genetics. Paul Miller, head of the Equal Employment Opportunity Commission, says the ADA's "protections are limited and uncertain."
The agency issued a 1995 guideline preventing employees from being "regarded as" disabled on the basis of a genetic marker. Nonetheless, Miller says the courts have not affirmed that theory.
Given the uncertainty, critics say additional protections are needed to keep employers from snooping into the secrets of your DNA.
Senate Minority Leader Tom Daschle, D-S.D., urged his colleagues to vote for his version of a genetic privacy bill. It would prevent employers from using genetic information as a basis for hiring or promotion. In addition, the measure would keep companies from disclosing a person's DNA without consent and give all victims of genetic discrimination the right to sue. The bill was defeated last month as an amendment to an appropriations bill.
Daschle cited several examples of discrimination, including that of a 40-year-old woman who tested positive for a breast cancer gene. After having preventive surgery to remove her breast and ovaries, the women lost her job-based insurance, and ultimately, her job.
"As the use of genetic tests increases, the number of genetic discrimination victims will increase, unless we specify clearly and unambiguously how genetic information may be used and how it may not be used," said Daschle. He says some 30 organizations have endorsed his bill.
The Clinton administration also backs the measure, and Collins refers to it as "preventive legislation." He points out that fear of genetic exposure has already had a negative effect on enrolling patients in research studies. "[T]heir most common reason for saying no is because they're afraid that information might get used against them," says Collins.