Yesterday the Senate voted unanimously to pass the Genetic Information Nondiscrimination Act (GINA), which after going back to the House for final approval is expected to be signed by President Bush as early as next week. This law will ensure that anyone who gets genetic screening tests will be protected from having that information shared with health insurers or employers. Up until now, women who tested positive for, say, one of the breast cancer genes could be denied insurance coverage or employment based on her predisposition to developing breast cancer years down the road.
In the works for 13 years, GINA got stalled along the way by a few obstinate lawmakers, as my colleague Dr. Bernadine Healy, U.S. News health editor, pointed out in this column. So consumer health advocates are greeting yesterday's news with a huge sigh of relief. "It's an extraordinary step forward and essential if we ever want to see the potential of genetic research," says Debra Ness, president of the National Partnership for Women & Families, a nonprofit advocacy group that has been lobbying for GINA's passage. "There are people afraid to enter research studies or get genetic testing, and we hope this legislation will alleviate those fears."
The law will: (a) prohibit the use of genetic information to deny employment or insurance coverage; (b) ensure that genetic test results are kept private; and (c) prevent an insurer from basing eligibility or premiums on genetic information. Specifically, it will prevent genetic discrimination cases like these, which were outlined in a 2004 report issued by the National Partnership:
- A 28-year old woman who tested positive for the BRCA-1 breast cancer gene was denied insurance coverage. Although she wasn't asked for her genetic information when she applied for insurance, she reported having undergone prophylactic mastectomies and a hysterectomy, which some women make the heart-wrenching decision to do to drastically reduce their chances of getting breast or ovarian cancer. According to the report, the insurance company put 2 and 2 together and denied her insurance; she ultimately had to hire a lawyer to procure coverage.
- Kim, a social worker, was fired from her job after her employer discovered, during a staff workshop on caring for aging parents, that Kim's mother died of Huntington's disease, putting her at a 50 percent risk of developing it herself.
- Mary, who had a mother and aunt who were both diagnosed with breast cancer, wanted to get tested for breast cancer genes so she could take preventive measures. In the end, she decided against testing because she was afraid it would hurt her chances of promotion at her law firm.
Have you ever opted not to get a genetic test because you were afraid of how the results would be used by others? I welcome your comments.