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NIH Plans Genetic Testing Registry

By a GenomeWeb staff reporter

NEW YORK (GenomeWeb News) – The National Institutes of Health is starting a public database on genetic testing that will allow consumers, researchers, health care providers, and others search through information submitted by genetic test providers, NIH said today.

The Genetic Testing Registry will serve as a resource of information about the availability, validity, and utility of the more than 1,600 genetic tests currently on the market. The goal of the GTR project is to use that information to advance both public health and research.

The program will encourage test providers to enhance transparency by sharing information about their tests with the public, will provide a resource for patients and scientists to find labs that offer particular tests, and will facilitate genomic data sharing, NIH said. Genetic test data will be integrated with information from other genetic, scientific, and medical databases in order to facilitate new research.

"The need for this database reflects how far we have come in the last 10 years," NIH Director Francis Collins said in a statement. "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."

The GTR, which is expected to be available in 2011, will be overseen by NIH's Office of the Director, and its development will be handled by the National Center for Biotechnology Information.

While NIH is developing the site, it said that it will engage with a range of stakeholders, including genetic test developers, test kit makers, health care providers, patients, and researchers, for the best ways to collect and display test information.

The Food and Drug Administration and the Centers for Medicare and Medicaid Services also will provide consulting to the project.