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- Ethical, Legal and Social Implications (ELSI) Research Program7
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genome Technology Program4
- Human Genome Reference Program (HGRP)2
- Impact of Genomic Variation on Function (IGVF) Consortium3
- Encyclopedia of DNA Elements (ENCODE) Project1
- Molecular Phenotypes of Null Alleles in Cells (MorPhiC)1
- Genomic Innovator Awards2
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)3
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
- Developmental Genotype-Tissue Expression (dGTEx)1
- Multi-Omics for Health and Disease (Multi-Omics)1
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… participants are stipulated by several regulations and policies.  U.S. regulations may not require informed … with the NIH Genomic Data Sharing (GDS) policy , researchers who intend to use human-derived biospecimens or … to continue to respect any known preferences of a research participant (e.g., as articulated in an advance directive) …
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.
… Prabarna Ganguly, Ph.D. … NHGRI researchers work with patients, families and the scientific community to improve the informed consent process. … As public interest and expanded research …
Policy Issues
Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.
… The use of human participants in biomedical, clinical and social-behavioral research can provide insights and … rights and welfare of the participants, and require that researchers clarify the benefits and risks of participating … an investigator must provide to each potential research participant a clear summary of the research study, including …
News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… under the new policy, as of October 1, 2017, NIH-funded researchers and their institutions will automatically be issued a … of Confidentiality under the new policy will prohibit researchers from disclosing names or other identifying …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… in the studies. This raises the question of when and how it is appropriate for the scientists to look for and … research findings. … There are ongoing discussions among researchers, ethicists, policymakers, and research … NHGRI policy. … IRRs are the results for a specific study participant from a scientific investigation. For example, in …
Fact Sheet
Diversity among genomics research participants is essential for improving the health of everyone.
… on the sequence of the four letters of life — A, C, G, and T. The dissimilarities among human genomes, referred to … full diversity of human populations in genomic studies, researchers can identify genomic variants associated with … at the individual and population levels. This way, researchers can better define a person's risk of developing a …
News Release
The National Institutes of Health (NIH) Genomic Data Sharing Policy includes expectations for how researchers should obtain, share and access genomic data from human and non-human sources. As a leader in genomics, including relevant policy development and implementation, the National Human Genome Research Institute (NHGRI) encourages data sharing practices that go beyond the NIH expectations.
… Genomic Data Sharing Policy includes expectations for how researchers should obtain, share and access genomic data from human and non-human sources. As …  is typically obtained by a research team, wherein a participant affirms if they are willing to share their …
Staff
Cristina Kapustij was the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute until June 2024.
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… Cristina Kapustij, M.S., is chief of the Policy and Program Analysis Branch at the National Human Genome … Ghanaim, NIH Genomic Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research participant protection … Cristina Kapustij was the chief of …
Staff
Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI)
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… Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) … Ghanaim, NIH Genomic Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research participant protection … Elena Ghanaim is the Policy Advisor …
Clinical Research
The Institutional Review Board (IRB)Â is responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural investigators in NHGRI and a number of other institutes.
… Board (IRB) is responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural investigators in NHGRI and a number of other institutes. … Oversight for human … NIH Research Subjects NIH Clinical Research Studies Active Consent / Assent Documents Recombinant DNA Advisory Committee …