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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Reader Comments
Cystic Fibrosis diagnosed prior to delivery of newborn.
Being in the medical field and having to deal with insurance companies on daily basis, I can assure you that this has been held up by "Big Time Insurance Execs" whose salaries by the way are posted for the public. But anyway...
Due to a lucky chance and great sonographer, we were able to test prior to delivery by amnio to find out that our newborn would be born with the Cystic Fibrosis gene. I now find it very assuring to know that insurance can't discriminate against our child for symptoms that may not have shown or been diagnosed for years. They deserve no protection further to enable them to deny insurance to our son, especially since they would not even cover the amnio (genetic testing) because it was "elective". Thanks to some obviously caring lawmakers to protect the people for a change instead of "Corporate America" who has been putting money in their pockets for years.
objections to GINA are not about privacy
Ah, but HIPAA already guarantees privacy of bona fide medical information. That's not the objection. Ask any health care worker: If your mom goes into the ER and asks the staff to call you, they can't tell you anything about her condition on the phone unless she signs a HIPAA release.
GINA basically means that that employers and insurers can't use the information that is gathered through official or other means to discriminate against an employee or insurance applicant.
As a public health worker, I can guarantee you that the objections to GINA's passage came from the insurance industry, who'd like to charge higher rates or exclude people with genetic conditions; and from employer groups that whined that a person with high medical bills could put small employers out of business. (Which would only be true if they self-insured, but is faintly possible.) Another objection would be that high costs of medical care for one person in a small-group employer are sometimes used by insurers to gouge them for more money, making insurance unaffordable for the whole group. And that really does happen.
These objections are based on the idea that people with genetic conditions can cost insurers millions of dollars, which would cut into their profits, and that to save money, they should be allowed to exclude them. Interestingly, it only takes one normal person having a motorcycle accident followed by a 2-month stay in the neuro ICU to have the same effect as far as cost goes.
So the whole discrimination thing is a way for insurers to keep even more money than the record profits they are already scoring. Next stop: Insurance reform!
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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