Francis Collins: U.S. Needs Genetic Privacy Protection

Francis Collins, director of the National Human Genome Research Institute, answered my query on the state of genetic privacy in the United States. We need a federal law, he said, because state laws are patchy and HIPAA only covers group insurance plans.

Well, here's the current situation: ten years ago, HIPAA provided some much-needed protections against genetic discrimination for people in the group health insurance market -- but who among us can be confident we won't need an individual policy at some time in the future? And your genetic information lasts for your life. So we need better protections in the individual market, and we need protections against employment discrimination too. Many states have passsed laws covering these areas, but they provide an uneven patchwork of protections, and many individuals are not protected because of ERISA.

So the solution really needed is ...

...effective federal legislation. As you probably know, the US
Senate passed such a bill unanimously in the 108th Congress, and againin the 109th Congress. The President signaled support, but the Housedid not act. Now our hopes are pinned on the 110th Congress.

Many surveys have documented the public's concern about this issue, andat NIH concern about genetic discrimination remains the most frequentreason for research subjects to decide not to participate in a study.
And so, without this kind of protection, the hopes for a new era ofeffective personalized medicine to reach the mainstream are highlyuncertain.

See previous coverage.

What do y'all think? Do you worry your genetics could be used against you by employers or insurers? Tell it to Bodyhack in the comments section.