The full title of this session, ABC’s of DNA, Unraveling the Mystery of Genetics Information for Consumers, led me to believe it would be a list of resources. It was that, to an extent, but moved well beyond that to an explanation of the philosophical, ethical, and legal issues surrounding genetic testing. It was a small group, so the presenter, Terri Ottosen, Consumer Health Outreach Coordinator, NNLM Southeastern/Atlantic Region, was frequently answering questions relating to a point in her presentation. This made the whole experience less of a canned presentation and revealed some of the real life dilemmas that people face, some of which are a bit scary, such as who really owns your medical records, who can access your medical records without your knowledge (insurance companies, prospective employers), and how accurate/reliable is the information in your medical records? How will genetically modified foods affect us, since we don’t even know whether or not the food we eat is "Frankenfood" and what are the implications for the Third World? As we learn more about which chromosomes are responsible for diseases, should we test newborns to see if they might have an altered chromosome that will result in disease? Should we test for diseases when we have no cure for them?

The Genetic Information Nondiscrimination Act (GINA) has passed both the House (on April 25th) and the Senate (on May 1st) and now awaits the president’s signature. There’s a National Information Resource on Ethics and Human Genetics (GenETHX), produced at Georgetown University. The full list of resources (and PPT slides that wouldn’t open for me) are at the NNLM site.

This was an extremely thought-provoking session, not just for librarians, but for everybody. After all, the issue of genome research affects us all. It’s science, but it’s also public policy. And, as Ottosen reminded us, the information contained in genetics databases, even those aimed at consumers, is hard to understand.