NIH Officially Launches Registry To House Genetic Testing Data

On Wednesday, NIH announced the official launch of its Web-based Genetic Testing Registry, which aims to serve as a centralized public resource for clinicians, researchers and consumers to access information about the availability and scientific basis of numerous genetic tests, New Scientist reports (New Scientist, 3/1).

About the Registry

The registry allows users to search for genetic tests by:

  • The name of the test;
  • The provider of the test; or
  • The specific condition or gene that could be detected with the test.

The registry also links to data and descriptions of genetic tests from the National Library of Medicine.

According to NIH, the information in the registry currently is limited to entries that were transferred from NIH's earlier GeneTests website. NIH now is asking genetic testing companies to voluntarily submit data to help expand the new registry (Young, "Nature News Blog," Nature, 2/29).

Goals of Registry

According to a Federal Register notice published in July 2011, the Genetic Testing Registry seeks to encourage providers of genetic tests "to enhance transparency by publicly sharing information about the availability and utility of their tests."

The notice added, "The overarching goal of the [registry] is to advance the public health research in the genetic basis of health and disease" (iHealthBeat, 7/29/11).

Advocacy Group Raises Concerns

Meanwhile, the Council for Responsible Genetics -- a consumer advocacy group -- said it is concerned that the registry lacks sufficient oversight to ensure the accuracy of its data.

At the bottom of each page of the registry, NIH notes that the agency "does not independently verify information submitted to the [Genetic Testing Registry]; it relies on submitters to provide information that is accurate and not misleading."

Jeremy Gruber, president of CRG, said that "there has been an abdication of leadership in overseeing genetic tests, [which] puts a level of uncertainty into the discourse that neither benefits the industry, researchers, nor consumers. I think we all lose when regulatory agencies create uncertainty in the market" ("Nature News Blog," Nature, 2/29).

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