Search Results
News Release
NHGRI researchers asked patients, parents and physicians in the sickle cell disease community (SCD) what they wanted and needed to know about genome editing to make informed decisions about participating in genome-editing clinical trials.
… and hopefully do a better job of pinpointing what kinds of information will be most useful to potential research … children with the disease. These participants completed a genetic literacy survey, watched an educational video about … genome editing, study participants demonstrated higher genetic literacy levels than estimated. The NHGRI study …
Policy Issues
Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.
… As the field of genomics advances, genetic and genomic tests are becoming more common in, and out of, the clinic. Yet most genetic tests today are not regulated, meaning that they go … Several federal agencies regulate genetic tests: the Food and Drug Administration (FDA), the …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… research uses for which samples, genomic data, and health information might be shared. Investigators should ensure that … samples and data must be for not-for-profit purposes or by non-commercial entities. Under some consent and governance … seems too narrow, or if it seems highly unlikely that genetic or genomic analyses would have been anticipated, the …
News Release
Four NIH grants will support research on the ethical, legal and social questions raised by genomics research advances and genomic information.
… research and the increasing availability of genomic information. The awards will fund researchers at … The projects will examine the use of genomic information in the prevention and treatment of infectious … The work builds on previous NHGRI-supported research.  Genetic Privacy and Identity in Community Settings …
Clinical Research
The study collects genetic and medical information from people with GNE myopathy to understand the symptoms and clinical course of GNE myopathy.
… History Study of Patients with GNE Myopathy collects genetic and medical information from people with GNE myopathy. Patients are … the symptoms and clinical course of GNE myopathy. This information is essential to prepare clinical treatment trials. … GNE Myopathy is a rare ( autosomal recessive ) genetic disorder that causes progressive skeletal muscle …
Policies and Guidance
NHGRI ensures that our website is in compliance with Section 508 of the Rehabilitation Act (29 U.S.C. 794d).
… Institute (NHGRI) makes every effort to ensure that the information available on our website is accessible to all … is in compliance with Section 508 of the Rehabilitation Act (29 U.S.C. 794d). … members of the general public) have access to and use of information and data comparable to that provided to …
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… Additionally, HIPPA and the Common Rule permit research on information from deceased individuals who did not provide … must authorize disclosure of individual health information, including individual research results.  It is … a specific circumstance, researchers should consider what information is important to convey to ensure respect for …
About NHGRI
Information about how the NHGRI receives its funding and decides how to spend its annual budget.
… Budget proposes to consolidate NHGRI into NIGMS. For more information on the FY 2026 NIH Congressional Justification, … the entire genomes of other organisms; ongoing research in genetic science and technology; and a broad program that … creation of policy recommendations on the use of genetic information. The NHGRI budget provides funding for a dynamic …
Educational Resources
Ancestry-informative markers are sets of polymorphisms for a DNA sequence found in different frequencies between populations from different geographical regions.
Data Sharing Policies
Sample informed consent language, aligned with each of the informational elements of consent for genomic data sharing (GDS) outlined by NIH as important to convey, in language understandable to prospective participants.
… (GRU)  Portions of your samples, genomic data, and health information will be stored for an unlimited period of time to … (HMB)  With your consent, we will share the information you give us with a national database for DNA information, called [...] which is controlled by [name of …