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NIH eyes genetic test registry

The US National Institutes of Health (NIH) has announced that it is creating a new voluntary genetic test registry that could help doctors and patients select and interpret genetic tests.

04 Jul 2010

The US National Institutes of Health (NIH) has announced that it is creating a new voluntary genetic test registry that could help doctors and patients select and interpret genetic tests.

The move comes amid increasing calls for more transparency about and regulation of genetic testing in the US.

Test makers can voluntarily submit information about the availability, validity, and clinical relevance of their products to the registry, which is expected to be available in 2011. The registry will be available to the public, which will allow doctors and patients to access a range of information about genetic tests.

Ms Joan Scott, director of Johns Hopkins University’s Genetics and Public Policy Center in Washington, DC, said that clinicians and patients needed information about which tests were available, what variants the tests detected, and what the results meant in the context of an individual’s medical or genetic history.

The Center is among a number of stakeholders who have urged the NIH to create a mandatory, rather than volutary, genetic test registry.


Published: 04 Jul 2010