Cross posted from Nature’s The Great Beyond blog.
A public, online registry providing information on the hundreds of available genetic tests is set to launch this coming spring, US National Institutes of Health (NIH) officials said at a public meeting in Washington DC this afternoon. But many of the details — such as what information it will include — have yet to be determined.
The NIH first publicly announced plans to create such a registry in March, though the idea had been circulation for at least a year. Exactly what the agency will do has been an active topic of discussion in a growing industry.
NIH director Francis Collins began the meeting by outlining some things that the registry would not do. Many in the genetics community have pushed for the registry to be mandatory rather than voluntary, but Collins gave a definitive “no” to such hopes today. Also, he said, “to be honest, it would take resources beyond our means” to review data in the registry to ensure it is accurate.
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