On Wednesday, a Senate committee passed a bill that would make it illegal to discriminate against people on the basis of their genes.
This is an important step: as we know more and more about the genetic variations that predispose people to certain diseases, it will become important to make sure the information doesn’t get misused in any way. The law would stop insurance companies from denying coverage to someone with a high-risk gene, for example.
That’s a long way off, however. The Senate has twice passed a similar measure unanimously, but it stalled both times in the House of Representatives. With a Democrat-controlled Congress, the outcome could be different. If it is, the law might also enocurage more people to get tested. Polls show that about 85% of people think their information would get misused—not exactly a strong incentive to get tested.
Even when people are willing to be tested, predictive screens open up a whole new can of worms—what to do with that information? Should people take certain extreme preventive measures, such as radical mastectomies if they carry high-risk breast cancer mutations? Should insurance companies pay for those treatments?
My friend and fellow journalism school alum Joanna Rudnick is making a personal and powerful documentary about these very issues.