New 'GINA' Law Would Stop Genetic Discrimination
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.
Tags: breast cancer | health insurance | insurance | genetics | Genetic Information Nondiscrimination Act | women's health
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What were the objections
The article says that the legislation was being held up for 13 years. What was the objection?
I know that some will point to partisan issues or some corporate boogie-man, but those don't stand up to serious debate for long. There must have been some sort of serious objection as genetic testing is bound to help everyone no matter of age, race, sex, wealth, or corporate affiliation. Some curiosities....
1. Were there any potential negative unintended consequences sited in holding up the legislation?
2. Would the legislation, due to privacy rules, prevent wide-spread survey or research for patterns that could be used by medical researchers?
3. Will the legislation prevent fore-warning individuals of potential future medical issues because their genetic data is private and not available to the CDC or other medical agencies?
4. In the Virginia Tech massacre, the health records of the shooter were private and that prevented the authorities from protecting us from a lunatic. Is this type of case relevant to this legislation? In other words, could genetic testing one day spot lunatics and the privacy provisions of the law prevent us from identifying the lunatics before they kill dozens of people?
Don't get me wrong, I'm all for privacy of medical information. I just don't accept at face value the arguement that there were no valid arguements. Surely mean old white male Republican corporate apologists (assuming they actually exist) have legitimate reasons for holding up such legislation (assuming they are the ones who held it up). So, what were the reasons?
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Genetic Nondiscrimination
The day this gets signed into law is not a day too soon. And, though now it seems to be passing by the vote of every sitting Senator (and perhaps most every House member), it's a curious thing that the whole thing could have been stalled for 13 years that Republicans held control of the Congress (until 2007.) It simply proves that very good ideas FOR CITIZENS can and will be advanced by Democrats when they have control, and foot-dragging for the benefit of CORPORATIONS will be commonplace when Republicans have control.
This law apparently gives citizens some protection from being bankrupted by the insurance industry with respect to "conditions" that might emerge in the future from genetic predispositions. The next step is a health care policy in this country that protects citizens and families from being bankrupted by the insurance industry as a result of "conditions" already diagnosed. Just as people deserve to be unafraid to have a genetic test, so also do they deserve to be unafraid of getting a bad recorded diagnosis in the event they have a checkup.
Get yourself a Democrat in The White House as well as a filibuster-proof boatload of them in the Congress, and then watch the magic of what can be done for PEOPLE when those few old Republican white men are no longer standing there to oppose you on behalf of the corporations.
Apr 25, 2008 15:03:55 PM [permalink] [report comment]