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The Informed Consent Resource

Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.

… topics such as a brief description of the underlying genomic science, the study design, the diseases(s) or … [condition, if applicable]. We will store your samples, genomic data, and health information, and share them, now and … will be read and this information will be stored. Your genomic data will be used to find differences and …

Policies and Guidance

NHGRI-Specific GDS Policy FAQs

Frequently Asked Questions regarding the GDS Policy expectations for NHGRI-funded genomic research.

… regarding the GDS Policy expectations for NHGRI-funded genomic research. … Data Types NHGRI encourages sharing of all genomic data and data types including, but not limited to, … technologies. Data pertinent to the interpretation of genomic data—such as associated phenotype data (e.g., …

Fact Sheet

Understanding COVID-19 PCR Testing

Genomic research has been central to understanding and combating the SARS-CoV-2 (COVID-19) pandemic.

… Key Points: Genomic research has been central to understanding and … reduced the cost and increased the speed of genetic and genomic sequencing, enabling the rapid pivot towards COVID-19 … PCR Testing … Understanding COVID-19 PCR Testing … Genomic research has been central to understanding and …

Outreach

USA Science and Engineering Festival

The USA Science and Engineering Festival is an opportunity to take part in hands-on genetics and genomics activities.

Policy Issues

IDE Greenhouse

NHGRI has created the IDE Greenhouse as an educational resource to help increase understanding of the regulation in the genomics context.

… FDA considers next-generation sequencing (NGS) and other genomic tests to be in vitro diagnostic devices (IVDs), a type of medical device. As genomic technologies continue to enter the clinical realm, … Sometimes, the applicability of IDE regulation to genomic tests can be difficult to interpret because the …

Policy Issues

Glossary of Statutory, Legislative and Regulatory Terms

This glossary contains definitions for commonly used terms (such as "bill", "statute", "regulation" and more) found in the Genome Statue and Legislative Database.

Policy Issues

Coverage and Reimbursement of Genetic Tests

Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.

… ways of evaluating genetic tests for reimbursement. … Genomic medicine has the capacity to revolutionize clinical … covered. NHGRI hopes to serve as a resource for advancing genomic medicine by assisting all types of payers in their … Insurance Companies, Next-generation Sequencing Tests, Genomic Medicine, Genetic Discrimination, Medicare … Payers …

News Release

National Institutes of Health celebrates DNA’s double anniversary

April 25, 2023 marks the 20th anniversary of the completion of the Human Genome Project and the 70th anniversary of the discovery of DNA’s double-helical structure, milestones being celebrated as part of National DNA Day.

… to use all means possible to bring the promise of the genomic revolution to those billions of people in the world … to use all means possible to bring the promise of the genomic revolution to those billions of people in the world … the Human Genome Project. “At NHGRI, we believe sparking genomic curiosity at an early age is a critical first step in …

Media Advisory

Annual National DNA Day lecture to honor Congresswoman Louise M. Slaughter

NHGRI memorializes genomics champion Rep. Louise M. Slaughter (D-N.Y.) with an annual National DNA Day lecture named in her honor.

For Teachers

Tools for Teaching the Microbiome

A microbiome is all of the genetic material found in a microbe, such as a bacterium, fungal cell or virus.