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May 01, 2010 (Vol. 30, No. 9)

Genetic Testing Registry Benefits

Comprehensive Information Will Enable All Players to Make Informed Decisions

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    Sharon F. Terry

    After several years of calls for a mandatory genetic tests registry from Genetic Alliance, the Genetics and Public Policy Center, the Coalition for 21st Century Medicine, and others, the National Institutes of Health (NIH) has finally taken the first step toward creating a single public resource that provides detailed information about genetic testing providers and the more than 1,600 genetic tests they offer.

    The new Genetic Testing Registry (GTR), to be housed at NIH, will be distinguished by its comprehensive nature, requiring evidence of test done, protocols, reagents, and enough parameters to discriminate between the same tests done in different labs. According to the NIH, the GTR will:

    • 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, healthcare providers, and patients, to locate laboratories that offer particular tests; and
    • facilitate genomic data-sharing for research and new scientific discoveries.

    Until now, there has been no comprehensive information available about tests for providers, payers, patients, and consumers to make comparisons and evaluations. The GTR will build on a foundation of openness to create such a resource.

    NIH will complete a broad consultation with potential users and submitters while the GTR is being established, which will be integral to its usability and success. All prospective stakeholders, including genetic-test developers, test kit manufacturers, healthcare providers, patients, and researchers, as well as other agencies, such as the Food and Drug Administration and the Centers for Medicare and Medicaid Services, will provide input.

    In addition to the valuable feedback each stakeholder group will provide, this demonstration of transparency and collaboration in and of itself is an important indicator of future success for the GTR. Novel partnerships among all stakeholders are crucial for the development of innovative, forward-thinking solutions. Initiatives are only truly collaborative while an environment of openness is maintained.

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