NIH Announces Genetic Testing Registry
News Mar 23, 2010
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
"The need for this database reflects how far we have come in the last 10 years," said NIH Director Francis S. Collins, M.D., Ph.D. "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. Our combined expertise in biomedical research and managing such large databases makes NIH the ideal home for the registry."
The GTR project will be overseen by the NIH Office of the Director. The National Center for Biotechnology Information (NCBI), part of the National Library of Medicine at NIH, will be responsible for developing the registry, which is expected to be available in 2011. GTR genetic test data will be integrated with information in other NIH/NCBI genetic, scientific, and medical databases to facilitate the research process. This integration will allow scientists to make, more easily and effectively, the kinds of connections that ultimately lead to discoveries and scientific advances.
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.