Congress Acts to End Genetic Discrimination

Do you ever wonder what they do down there in Washington, D.C.? I mean, what’s “the government” really look like, in action? If you’re not acquainted with the political scene, it seems like a mish-mash of press conferences, hearings, and a bunch of guys in suits running around doing “stuff”—who knows what.

But last week, Congress passed a bill that made me think to myself, OK, there really IS something good happening, something besides all the back-stabbing that goes on in the endless campaign for political power. After being debated for 13 years in various forms; and after 15 months wending its way through committee in its current version, the Genetic Information Nondiscrimination Act (GINA) passed by a 414-1 vote in the House, and a 95-0 vote in the Senate. And that’s good news for you, me, our families, and generations to come.

To summarize, GINA prohibits insurance companies and employers from discriminating against people on the basis of genetic predisposition to particular health problems: heart trouble, diabetes, cancer, any of the health issues we can inherit from our parents. Sen. Olympia Snowe of Maine is the bill’s sponsor. Having lived in Maine for years, I witnessed Sen. Snowe’s hard work on behalf of the American people: she “gets it,” and she truly cares. So it’s not surprising she was the impetus behind making this legislation a reality.

Perhaps you didn’t realize that a “bad” gene could prevent you from obtaining health insurance. While group health insurors had already been prohibited from genetic discrimination, carriers offering individual insurance could deny you coverage if you carried, for instance, the BRCA1 gene for breast cancer. Or they could sell you insurance, but at a more expensive rate than the general populace.

In addition, potential employers could use genetic information to refuse to hire you.

With GINA’s passage, that kind of discrimination is now illegal.

Francis S. Collins, M.D., director of the National Human Genome Research Institute (part of the National Institutes of Health), addressed Congress after passage of the bill, saying, “We are living in a remarkable time when it is becoming possible to look into our own genetic makeup to predict the ills to which we may be at risk, to prevent many diseases from occurring, and to design treatments based on our DNA blueprint that will both effectively treat the illnesses, while avoiding undesirable side effects.”

The recent discovery of three more potential breast cancer-causing genes makes this information resonate even more strongly for those of us with that disease. It’s becoming increasingly apparent that genetics probably played a key role in our illness. But, knowing that our genetic information could be used against us, how many of us in the past would have opted for testing?

Now, we can use all the means in our power to identify potential health issues and deal with them—without fear that we may be denied a job, or health insurance.