Posted by: manafanana | April 30, 2008

Senate Passes Genetic Nondiscrimination Act

Last week the U.S. Senate passed a bill that was literally over a decade in the making. The bill (called GINA), which can be read in it’s entirety here, essentially outlaws the use of genetic information to discriminate against patients, specifically with respect to insurance premiums and eligibility and job loss. While in the past decade, many states had passed legislation that prevented this type of discrimination, the country was in dire need of more sweeping federal protections, especially as more and more genetic tests have become available.

This article from the Associated Press states:

There are more than 1,100 genetic tests available today, she said, but these are “absolutely useless” if fear of discrimination discourages people from taking tests or participating in clinical trials.

Genetic testing could lead to early, lifesaving therapy for a wide range of diseases with hereditary links such as breast and prostate cancer, diabetes, heart disease and Parkinson’s disease. (AP)

I’m gonna be very honest here and say that I have a personal stake in this bill, and that I’ve been waiting for years for this to pass. My father died of a degenerative genetic disease a few years ago, and I have been unable to get testing for it because of the fear that, like my father, I would also be denied insurance coverage. I’ve had to be very careful to keep my family history a secret from my doctors, which totally for me defeats the purpose of getting medical care in the first place. If I have the same disease, there may be new treatment options available to me, but without the protections of this bill I would have never known since the fear of not having any insurance now always outweighed the desire for treatment for a disease that would likely not affect me until middle-age.

This bill will hopefully prevent a whole slew of problems that were looming over our already broken healthcare system, and prevent unfair discrimination or forced genetic testing. I have yet to read the bill all the way through in its new form with amendments and the like (I read a tentative version over a year ago), but I will likely follow-up this post with another once I read through it, and follow this story as new issues or cases come to light.



  1. Insurance companies have way too much control over our ways of life, whether it’s medical, auto, or life insurance. A medical insurance company is more of an accountant business than a truly medical mindset, so why should they be allow to choose whether or not people can take certain treatments or medications? Why should the lives of people be under the control of faceless corporations that see the masses as little more than a meaningless number, as being a risk and little more? Who cares about the doctors taking the hypocratic oath, the insurance companies should take the same damn thing.

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  3. This bill is great news, and has been a long time coming. I hope it truly protects people from the type of medical discrimination you describe.

  4. I ran into this and now I’ve started to cry.

    I’m undergoing genetic testing for an immune disorder, and all the preliminaries are positive. And now I have hope that I will not be left by the wayside to die.

  5. Karak,

    I hope everything goes well for you. I know what it’s like to be in limbo over genetic testing, and fear the possible outcomes and implications. I have chosen not to get tested yet–I have a 50% chance of having the disease I mentioned in the post. But the important thing is that now we have a choice–a choice that will allow us and our doctors to make the best decisions for our own health and our own families. I truly wish you the best of luck ❤

    This may not pertain to you in particular, but I should probably add that this bill only covers health insurance providers, not life insurance providers. Health insurance is, of course, the more critical issue, but families that plan to buy and/or rely on life insurance ought to look into purchasing it before getting tested, or make sure that potential bad news from a test won’t interfere with pre-existing benefits. Also, parents should take into consideration that, if this hole in the system is not fixed decades down the line, getting your children tested could affect their ability to obtain life insurance for themselves.

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