Wednesday, April 9, 2008

4:30pm

G10 Biotechnology Building

The Human Genome Project has given us a wealth of tools to study, and information about, our genes that will keep researchers busy for decades to come. Already today, anyone with enough money can have his or her entire genome sequenced, and there are dozens of private companies who will perform DNA tests for everything from diabetes to Alzheimer disease to a propensity for ear wax. For some, having their personal genome sequenced is an empowering act that they believe will allow them to take more control of their lives. But there\’s a hitch – the ability to uncover this information has far outstripped our understanding of what it means. Very little of the information coming out of most personal genome testing today has a clear medical benefit. Even more troubling, these tests can be the equivalent of molecular full monty – in the wrong hands, the information may reveal things you don\’t want to disclose, not only about yourself but about other members of your family. How will society balance the desire to take control of personal medical decision making against the current absence of evidence that knowing your genetic code will have any real positive medical benefits? And how do we protect an individual\’s genetic privacy from employers, insurers, and law enforcement in an era where no electronic record is truly safe?