Francis Collins announces voluntary genetic test registry @ Genetic Future:

“NIH Announces Genetic Testing Registry
Database to Fill Information Gaps and Serve as Research Resource”

The National Institutes of Health announced today that it is creating a public database that researchers, consumers, health care providers, and others can search for information submitted voluntarily by genetic test providers. The Genetic Testing Registry (GTR) aims to enhance access to information about the availability, validity, and usefulness of genetic tests.

Currently, more than 1,600 genetic tests are available to patients and consumers, but there is no single public resource that provides detailed information about them. GTR is intended to fill that gap.

The overarching goal of the GTR is to advance the public health and research into the genetic basis of health and disease. As such, the registry will have several key functions:

-Encourage providers of genetic tests to enhance transparency by publicly sharing information about the availability and utility of their tests

-Provide an information resource for the public, including researchers, health care providers and patients, to locate laboratories that offer particular tests

-Facilitate genomic data-sharing for research and new scientific discoveries

During the development process, NIH will engage with stakeholders — such as genetic test developers, test kit manufacturers, health care providers, patients, and researchers — for their insights on the best way to collect and display test information. In addition, other federal agencies, including the Food and Drug Administration and the Centers for Medicare and Medicaid Services, will be consulted.

More information about the Genetic Testing Registry and NCBI is available at: http://www.ncbi.nlm.nih.gov/gtr/.