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- 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
- Ethical, Legal and Social Implications (ELSI) Research Program7
- Genomics-Enabled Learning Health Systems (gLHS)1
Clinical Research
The Protocol Service Center provides assistance in the development and administration of study protocols requiring NIH Institutional Review Board approval.
… The National Human Genome Research Institute (NHGRI) Protocol Service Center (PSC) … and staff in the development and administration of study protocols that require NIH Institutional Review … Board approval.​ ​ … Human Subjects Research, Research Privacy, Privacy Of Research Participants, Clinical Trials, …
News Release
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy.
… unrestricted access to genomic summary results for most of the studies we support in order to advance health or further research purposes. These summary results are importantly … research and clinical care, with low risk to participants' privacy. However, because there could be a small risk of …
Fact Sheet
Diversity among genomics research participants is essential for improving the health of everyone.
… similar in most ways, our biological processes make each of us unique. Many aspects of those processes are encoded in … who have given permission for their DNA to be used for research are from European ancestry, making many populations … populations. … Increasing the representation of diverse participants in genomics research requires an investment of …
News Release
NIH issues a notice seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing Policy.
… and Public Liaison Branch … Today, the National Institutes of Health (NIH) issued a notice in its Guide to Grants and … NIH's goals to promote scientific advances and protect research participants' privacy interests by allowing genomic summary results from …
News Release
An online Informed Consent Resource created in 2009 by NHGRI has been updated to keep pace with advances in genomics over the past several years
… studies are increasingly integral to the advancement of a spectrum of disease-based research. As knowledge stemming from the completion of the … return of results, research involving children, and privacy and confidentiality. It also includes examples and …
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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… Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI). She spearheads NHGRI’s scientific … NIH and grantee partners on data sharing and privacy policy issues. For the last three years, she has …
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 Research Institute. Ms. Kapustij spearheads the branch’s … Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research participant protection … …
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. … The informed consent process and consent … increase participation of people who have concerns about privacy or do not want their samples and data used for …
Research at NHGRI
The NHGRI Intramural Research Award recognizes research achievements by trainees in basic, clinical, and social behavioral science research.
… The NHGRI Intramural Research Award distinguishes meritorious research … a single, notable research achievement or a larger body of work of exemplary quality and significance. … 2016 Award …
Talking Glossary
Scientific racism is a historical pattern of ideologies that generate pseudo-scientific racist beliefs.
… racism. Scientific racism is a historical pattern of ideologies that generate pseudo-scientific racist beliefs. … racism. Scientific racism is a historical pattern of ideologies that generate pseudo-scientific racist beliefs. … influences racial bias and discrimination in science and research. Leading scientists across scientific institutions …