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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 … an investigator must provide to each potential research participant a clear summary of the research study, including …
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 … that you understand what you will need to do to be a participant, and how much time it will take. What healthcare … understand, prevent, detect and treat disease. … Human Subjects Research, Genetics Research, Clinical Trials, …
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. … To implement one of the law's privacy provisions, … investigators who conduct sensitive, health-related human subjects research be issued Certificates of …
Clinical Research
The Institutional Review 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.
… responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural … Research Protections (OHSRP). The OHSRP promotes the protection of rights, safety and welfare of human subjects, …
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 … NHGRI policy. … IRRs are the results for a specific study participant from a scientific investigation. For example, in … of IRRs and IFs is relevant for a variety of fields of human health research. However, the volume of genomic data, …
Research Funding
The following are research areas of interest that have been identified by the participating NIH institutes and centers (ICs). Program Officer contact information is also included.
… The following are research areas of interest that have been identified by the … Research Domains webpage .  Contacts: Joy Boyer National Human Genome Research Institute (NHGRI) Telephone: … uses of biological samples and of associated data (e.g. participant preferences, informed consent, governance, …
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 … with respect to genomic summary results and potential participant risks, including bringing together leaders in the … By Eric D. Green, M.D., Ph.D., Director, National Human Genome Research Institute Carrie D. Wollinetz, Ph.D., …
Staff
Cristina Kapustij is the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute. ​
… of the Policy and Program Analysis Branch at the National Human Genome Research Institute. Ms. Kapustij spearheads the branch’s … Consent, health privacy regulations, human research participant protection … Cristina Kapustij is the chief of …