Search Results
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 of the genome and to help NIH in its mission to understand, … detect and better treat disease. In some cases, research participants may also gain some individual benefit, such as …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… An individual’s privacy should be respected when their genomic information is used for research, clinical applications or other uses. This page … on the specific laws and policies that protect the privacy of genetic and genomic information. In the United States, the …
Fact Sheet
Participation in genomics research 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 our DNA, which is based on the sequence of the four letters of life — A, C, G, and T. The … DNA; sometimes these variations can influence our chances of developing a disease. So far, most people who have given …
News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… One goal of the 21st Century Cures Act, enacted December 13, 2016, was to strengthen privacy protections law for research participants. The new law specifically requires … To implement one of the law's privacy provisions, the National Institutes of Health (NIH) …
Clinical Research
FAQs for participants in the Autoinflammatory Diseases Study.
… Others may need to travel to the National Institute’s of Health (NIH) Clinical Center for a more detailed clinical … for parents of affected children Leukapheresis (rare) Research bone marrow aspiration and biopsy (rare; age 12 or … autoinflammatory symptoms. Samples provided by our participants are necessary to help built our knowledge of the …
Policies and Guidance
NHGRI does not collect personally identifiable information about you on genome.gov unless you volunteer to provide it.
… Thank you for visiting genome.gov and reviewing our privacy policy. The U.S. Department of Health and Human Services, of which NHGRI is a part, does … or court order. The NHGRI is committed to protecting your privacy. We will not collect any personal information about …
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 … with regulations that protect the rights and welfare of the participants, and require that researchers clarify the … NIH, is subject to the Federal Policy for the Protection of Human Research Subjects, or 'Common Rule' ( Code of …
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 participate in the studies. This raises the question of when and how it is appropriate for the scientists to look for and share such research findings. … policymakers, and research participants about the return of individual research results (IRRs) and incidental findings …
Research Funding
The following are research areas of interest that have been identified by the participating NIH institutes, centers, and offices (ICOs) on the investigator-initiated ELSI Research Grants (R01, R21, R03). Program Officer(s) contact information is also included for each ICO.
… The following are research areas of interest that have been identified by the … and offices (ICOs) on the investigator-initiated ELSI Research Grants ( R01 , R21 , R03 ). Program Officer(s) … 1990, the ELSI Research Program has supported a large body of research on a wide range of topics. ELSI 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 researchers has been a challenge. Recent advances in privacy technology have begun to make a difference in this equation. A paper published in the Journal of the American Medical Informatics Association compares …