Call for comment on US genetic test registry plans

7 June 2010

The US National Institutes of Health (NIH) has issued a call for input and feedback on recently announced plans to create a Genetic Testing Registry from stakeholders including researchers, test developers and manufacturers. The Genetic Testing Registry (GTR) will provide information for consumers on the availability, validity and usefulness of genetic tests (see previous news).

The new consultation poses questions about the potential uses of the GTR for different groups and purposes: researchers, patients/consumers, health care providers, clinical laboratory professionals, funders, genetic test providers, policy makers, and electronic health records It also seeks responses to a range of questions, including:
  • The potential uses of the GTR for different groups and purposes
  • The potential risks and benefits of facilitating public access to information about genetic tests
  • Which data elements are required to describe each genetic test
  • Whether references to other sources of data would be beneficial
  • How to ensure ongoing stakeholder input to maintenance of the GTR
  • Barriers and drivers for submission of data about genetic tests
  • Whether any types of genetic test should not be included in the GTR
Responses are requested by 27th June 2010.

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