March 4, 2012
NIH Genetic Test Registry Is Online
The National Institutes of Health (NIH) has been in the process of designing a central repository for listing the genetic tests that are available in the U.S. This initiative created the Genetic Test Registry (GTR), which just launched last week. The site aims to be a centralized public database, but participation is voluntary and NIH rejected calls for mandating that genetic test providers list their services in the registry. The site was developed by NIH over several years, with the solicitation of public comments and public meetings. The functions of the site include “(1) encouraging providers of genetic tests to enhance transparency by publicly sharing information about the availability and utility of their tests; (2) providing an information resource for the public, including health care providers, patients, and researchers, to locate laboratories that offer particular tests; and (3) facilitating genetic and genomic data-sharing for re research and new scientific discoveries.” Prior to the creation of this registry, the NIH supported website Genetests operated a kind of clearinghouse for genetic testing; the new site now facilitates migration from Genetests to GTR; both sites include the very useful peer-reviewed GeneReviews resource. NIH features a prominent notice on the GTR site which reminds all who visit that the available information has not been verified by NIH and will not be; the notice is a subtle reminder of the absence of federal regulation for most genetic testing. Despite the voluntary nature of the new GTR registry, well-known network effects are likely to operate and create momentum for inclusion; a kind of federal imprimataur without regulatory oversight will certainly entice participation. Furthermore, as the public comes to regard the resource as at least an authoritative cataloging, failure to participate is likely to create a negative inference for any provider. Market forces will operate to make this registry an essential cost-free mechanism for genetic test providers to reach patients and health professionals.