Protecting Genetic Privacy

It is frightening to think that people may put their lives at risk rather than take a test to determine if they are at risk for a disease. But this is precisely what happened to Hampden resident Bonnie Lee Tucker’s daughter. For fear that a positive result would ruin her chances of obtaining health insurance, Ms. Tucker’s daughter did not have a breast cancer screening test although nine women in her family, including her mother, had had the disease. According to the National Institutes of Health, nearly one-third of those who were offered a test for breast cancer risk by the agency declined citing concerns about health insurance discrimination.

To ensure that people like Ms. Tucker’s daughter get the testing that they need without fearing the loss of a job or insurance benefits, Sen. Olympia Snowe introduced legislation in 1996 to ban genetic discrimination by employers and insurers. Six years later, an updated version of the bill is scheduled for a vote in the Senate today.

Much compromise went into crafting the bill. A key to earning bipartisan support for the measure was to ensure that healthy people with a predisposition to a disease are not afforded more protection than someone who already has the illness. Sen. Snowe’s bill accomplishes this by building upon existing protections under the Civil Right Act rather than creating a new class of protected people.

Under the legislation, insurance companies would be barred from collecting genetic information prior to one’s enrollment in a health plan and would not be able to use genetic information to deny coverage or set premium rates. Genetic information could not be used by employers to make hiring, firing, promotion and job assignment decisions.

While Sen. Snowe’s bill is likely to easily pass the Senate, a similar bill is moving slowly in the House. House members should realize that six years of work and compromises have produced a bill worth emulating.

Recent advances in genetic mapping and testing will be for naught if people are afraid to access such information. As Sen. Snowe has said: “Americans shouldn’t have to make a choice between taking charge of their own care or keeping their insurance. …We simply can’t allow science to outpace public policy on this potentially life-or-death issue.” Enacting the Genetic Information Nondiscrimination Act of 2003 will ensure that no one has to make that choice.