Search Results
News Release
Cari Young and Julie Nadel join NHGRI as public policy and education fellows.
… September, Ms. Young will join the National Human Genome Research Institute (NHGRI) as the 14th American Society of Human Genetics (ASHG)/NHGRI Genetics and Public Policy Fellow. She will spend her first four months with the … contributed to her understanding of the intersection of research and policy. As part of her graduate program, she …
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. … Policy Issues in Genomics … considers the ethical, legal and social aspect of genomics research in our work, including these key policy issues. … considers the ethical, legal and social aspect of genomics research in our work, including these key policy issues …
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, … A wide range of genomic research studies need participants, each with different …
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 … appropriate for the scientists to look for and share such research findings. … among researchers, ethicists, policymakers, and research participants about the return of individual research …
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.
… 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 … (GA4GH) and funded in part by the National Human Genome Research Institute (NHGRI). The Beacon Project tests the …
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 … efforts to understand the policy implications of genomics research and technologies, assess policy needs for the field, …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… 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 … to re-identify individuals using genomic data in the research context have been purely for academic purposes …
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 …
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. …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… Exception for Samples Lacking Explicit Consent for Future Research Use and Broad Data Sharing Investigators … non-human genomic data that are subject to the NIH GDS Policy to be submitted and released on the same timeline as … NHGRI data sharing policies. For general NIH data sharing policy information, please visit NIH's Scientific Data …