While not the same as taking a scanner through your local Bed, Bath and Beyond, it may not be long before you can look at a genetic test and learn much more about it than what the manufacturer tells you. The National Institutes of Health is forming a genetic test registry (H/T ScienceInsider). The Office of the Director is organizing the effort, which will be managed by the National Center for Biotechnology Information. While only voluntary (it’s not clear if the Institutes (NIH) has the authority to require registration), the registry offers the possibility that the over 1600 tests currently available (and the hundreds no doubt coming) could be accessed and reviewed in a single place. Better to have a central repository with more detailed information than to rely on the brief description from a health provider or brochure. Ideally the register would be able to:
- Encourage providers of genetic tests to enhance transparency by publicly sharing information about the availability and utility of their tests
- Provide an information resource for the public, including researchers, health care providers and patients, to locate laboratories that offer particular tests
- Facilitate genomic data-sharing for research and new scientific discoveries
In other words, the registry would facilitate the flow of information between consumers and test providers, and between test providers and genetic researchers. The registry would not start before 2011. At the moment the NIH is consulting with stakeholders about the registry and will likely seek public comment at a later time. In the meantime, I’d recommend interested people to keep an eye on the registry website, and consult the FAQ and Background Reading found there. It makes a good case for the value of a genetic test registry.