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:
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.