Voice of The People is the Voice of God!

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NIH Seeks Comments on Genetic Testing Registry

The National Institutes of Health wants to hear what the public thinks about its planned Genetic Testing Registry (GTR), which will be a resource of information for healthcare providers and patients to learn about tests and labs, and for researchers and regulators to watch the genetic testing industry.
NIH has opened a 30-day comment period on its GTR project, which will serve as a repository of information about genetic tests submitted by researchers, test developers, and manufacturers. The GTR will include information about how the tests are used, about their validity and utility, and about how they are accessed.
The database, which is expected to be running in 2011, will be overseen by the NIH's Office of the Director, and it will be developed by the National Center for Biotechnology Information.
"The registry will help consumers and health care providers determine the best options for genetic testing, which is becoming more and more common and accessible," NIH Director Francis Collins said in a statement when the program was first unveiled in March 2010.
NIH wants to receive input on the resource from a range of stakeholders including patients, test developers, test kit makers, health care providers, and researchers on the best methods for collecting and displaying information about genetic tests.
In line with recommendations from the Secretary's Advisory Committee on Genetics, Health, and Society, NIH in particular wants the registry to include information on the validity and utility of genetic tests.

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