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.