Could Genetic Discrimination Cost You Your Job?
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.
However, an expert on personnel issues warned the committee that Daschle's bill could have unintended consequences. The measure would make it generally illegal to collect predictive genetic information, including such widely used tools as a family medical history.
"Certainly, this is not a policy Congress would want to embrace," said Susan Meisinger, chief operating officer and executive vice president of the Society for Human Resource Management.
A spokesman for the Health Insurance Association of America says existing laws already prevent genetic discrimination and adding new standards could increase premium costs. "There is no evidence of any discrimination. Furthermore, we've polled our members. None of them have indicated that they require people to submit to genetic tests for the purposes of getting coverage," Richard Coorsh tells WebMD.