Search Results
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… to inform participants about the risks and benefits of participating in a research project. … research uses for which samples, genomic data, and health information might be shared. Investigators should ensure that … 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.
… Four new grants from the National Institutes of Health will support research on the ethical, legal and … in genomics research and the increasing availability of genomic information. The awards will fund researchers at … 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.
… The Natural History Study of Patients with GNE Myopathy collects genetic and medical information from people with GNE myopathy. Patients are … GNE Myopathy is a rare ( autosomal recessive ) genetic disorder that causes progressive skeletal muscle … body myopathy type 2 (IBM2) or Nonaka myopathy. Symptoms of the disease usually appear between 20 and 40 years of age …
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, see the NIH Office of Budget website . The National Human Genome Research … the entire genomes of other organisms; ongoing research in genetic science and technology; and a broad program that …
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 users and 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.
… regulations may not require informed consent for all kinds of genomics research (e.g., if the samples or data are … informed consent. According to the current definition of "human subject" in the Common Rule, informed consent is … Additionally, HIPPA and the Common Rule permit research on information from deceased individuals who did not provide …
Educational Resources
Ancestry-informative markers are sets of polymorphisms for a DNA sequence found in different frequencies between populations from different geographical regions.
… Ancestry-informative markers are sets of polymorphisms for a DNA sequence found in different … Ancestry-informative markers are sets of polymorphisms for a particular DNA sequence that appear in … between populations from different geographical regions of the world. Ancestry-informative markers can be used to …
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.
… encourages the broadest appropriate future use and sharing of genomic and phenotypic data.  Example 1: Consent for … (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 …
15 Ways Genomics Influences Our World
Genomics is fostering an appreciation for what our DNA means for our health, identities and culture.
… sequence raises many issues regarding the social context of genomics. Information about our genomes is starting to become part of our everyday life. Genomic information shapes societal messages about DNA in how we …  was formally established at the National Institutes of Health (NIH) as an integral part of the Human Genome …
Educational Resources
Genetic counseling is the professional interaction between a healthcare provider with specialized knowledge of genetics and an individual or family.
… Genetic Counseling … Genetic counseling is the professional interaction between a healthcare provider with specialized knowledge of genetics and an individual or family. … Genetic Counseling, Healthcare, Prenatal Testing, Genetic Disease, Genetic Disorder, Health Professional …