Feature

NIH Requests Public Comments on the Genetic Testing Registry (GTR)

In a July 27 Federal Register notice, the National Institutes of Health (NIH) requested public comments on the Genetic Testing Registry (GTR), an online database to which genetic test developers, manufacturers and researchers would voluntarily submit detailed information about their genetic tests. The goal of GTR, scheduled to launch later this year, is to provide consumers and health care providers with information on the usefulness and availability of thousands of genetic tests. (more)

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Highlights

• Newborn Screening in the Genomic Era
  On December 13-14, 2010, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Human Genome Research Institute, and the NIH Office of Rare Diseases Research, sponsored Newborn Screening in the Genomic Era: Setting a Research Agenda. The meeting aimed to identify the trans-NIH research agenda that would lead to new genomics concepts and technologies for newborn screening and child health. Experts from academia, industry and federal agencies in the fields of newborn screening and genomics attended. Drs. David Valle (Johns Hopkins) and Piero Rinaldo (Mayo Clinic) chaired.
• The Genetic Information Nondiscrimination Act of 2008: Information for Researchers and Health Care Professionals
• Guidance on the Genetic Information Nondiscrimination Act: Implications for Investigators and Institutional Review Boards (IRBs) [hhs.gov]

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Last Updated: February 7, 2012

See Also

Genetics and Public Policy Fellowship

Policy and Program Analysis Branch
Policy Staff Contact Information

Ethical, Legal and Social Implications Research Program
NHGRI Extramural Research Program

Social and Behavioral Research Branch
NHGRI Intramural Research Program

On Other Sites:

The American Society of Human Genetics (ASHG)

Genetic Alliance

The Genetics and Public Policy Center

Genetics and Social Science

Genomics Law Report