NIH Proceeding on Genetic Test Registry

In March of last year, the National Institutes of Health (NIH) announced its intention to compile a Genetic Test Registry (GTR), which would provide an authoritative source of available genetic tests in the U.S.  Currently, there are at least 2384 diseases for which some form of genetic testing is available, according to the online Genetests database, maintained by the National Center for Biotechnology Information.  The genetic testing field has come under criticism and scrutiny for the lack of standardization and regulatory oversight, well documented by the HHS Secretary's Advisory Commitee on Genetics, Health and Society here. The establishment of the NIH registry is expected to increase the amount of information provided for the available tests, which theoretically will increase scrutiny and evaluation, but it is important to note that the federal registry will host provider-generated information but will not serve as a neutral reviewing authority.