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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
Policy Issues
Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.
… participants in biomedical, clinical and social-behavioral research can provide insights and discoveries that could not … funded by or carried out at NIH, is subject to the Federal Policy for the Protection of Human Research Subjects, or … such as the measures in place to protect participants' privacy, and under what circumstances information might be …
Staff
Cristina Kapustij was the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute until June 2024.
… 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 … …
Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… Participating in genomics research is an opportunity to support scientific exploration … prevent, detect and better treat disease. In some cases, research participants may also gain some individual benefit, … that any risk to participants is minimized. How will my privacy be protected? Some genomics research is on … understand, prevent, detect and treat disease. … Policy Issues …
News Release
Three practical strategies for reducing the risk of re-identification, the process by which anonymized personal genomic data are matched with the owner.
… Ph.D. … Data sharing is key to the success of medical research, and participants in medical research are often those most eager to see their donation of … to researchers has been a challenge. Recent advances in privacy technology have begun to make a difference in this …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… When conducting clinical research studies, scientists may discover new health-related … to examine these questions and inform future NHGRI policy. … IRRs are the results for a specific study … Insurance Portability and Accountability Act (HIPAA) Privacy Rule also plays a currently ambiguous role regarding …
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)
… Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office … 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 …
About Genomics
NHGRI considers the ethical, legal and social aspect of genomics research in our work, including these key policy issues
… consider the ethical, legal, and social aspect of genomics research in our work, including these key issues. … Related Content … Policy Issues in Genomics … NHGRI considers the ethical, legal and social aspect of genomics research in our work, including these key policy issues. … …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… de-identification. … Our IRB designated our project “not research” because we are planning only quality … of metadata or other information that may be included with research data: Methodology and procedures used to collect … define genomic data as an identifier. However, NIH has policy protections in place to mitigate the risk of …
Policies and Guidance
Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.
… maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic … participant consent for unrestricted access or for General Research Uses through controlled access. Similarly, consent … primary study, if consistent with study design. When the policy applies NHGRI encourages sharing of all data types. …
Staff
Rebecca Hong is a scientific program analyst in the Policy and Program Analysis Branch at the National Human Genome Research Institute.
… Rebecca Hong is a scientific program analyst for the Policy and Program Analysis Branch (PPAB) at the National Human Genome Research Institute (NHGRI). Her responsibilities in PPAB … also serves as NHGRI's liaison with the NIH Office of AIDS Research and helps coordinate annual budget requests for …