Search Results
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 discoveries that could not … or other methods. All federally-funded research with human participants such as that supported by NIH must comply … All research with human participants supported by the United States government, …
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 …
News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… 13, 2016, was to strengthen privacy protections law for research participants. The new law specifically requires … is collected from participants as part of federally-funded research. … investigators who conduct sensitive, health-related human subjects research be issued Certificates of …
Fact Sheet
Participation in genomics research is essential for improving the health of everyone.
… What makes human genomes diverse? While humans are similar in most ways, … of life — A, C, G, and T. The dissimilarities among human genomes, referred to as variants, come from differences in our DNA sequences.  The human genome is more than 3 billion letters long, which means …
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.
… responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural … Oversight for human subjects research happening in the National Human Genome Research … National Institutes of Health (NIH) Office of Human Research Protections NIH Ethics Consult Service  NIH …
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 …
Clinical Research
FAQs for participants in the Autoinflammatory Diseases Study.
… needs and a patient’s ability to participate, so each participant’s experience with the study will look a bit … for parents of affected children Leukapheresis (rare) Research bone marrow aspiration and biopsy (rare; age 12 or … are necessary to help built our knowledge of the human immune system and autoinflammation.  What is the …
News Release
Scientists are using an exciting gene editing tool called CRISPR/Cas9 to protect plants from harmful DNA viruses, strengthening the plant's protections.
… a plant's genome to successfully strengthen the plant's protection against viruses. Featured in Genome Biology , this research represents a promising method for cultivating … viruses. Understanding plant genomics is valuable for human nutrition and health. In addition to playing an …
News Release
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy.
… studies we support in order to advance health or further research purposes. These summary results are importantly distinct from other genomic research data, most notably in that they do not include … By Eric D. Green, M.D., Ph.D., Director, National Human Genome Research Institute Carrie D. Wollinetz, Ph.D., …
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 … & Health (GA4GH) and funded in part by the National Human Genome Research Institute (NHGRI). The Beacon Project tests the …