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, … that any risk to participants is minimized. How will my privacy be protected? Some genomics research is on …
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 … who have given permission for their DNA to be used for research are from European ancestry, making many populations … and insufficient communication left some research participants unclear about the benefits of their …
News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… Sheena Faherty, Ph.D. … 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 …
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 … such as the measures in place to protect participants' privacy, and under what circumstances information might be …
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 … questionnaire, customer satisfaction survey, epidemiology research study, etc., we will maintain the information you …
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 …
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 … Insurance Portability and Accountability Act (HIPAA) Privacy Rule also plays a currently ambiguous role regarding …
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 … participant preferences, informed consent, governance, privacy and security, and data sharing); this includes …
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.
… Sheena Faherty, Ph.D. … Data sharing is key to the success of medical research, and participants in medical research are often … to researchers has been a challenge. Recent advances in privacy technology have begun to make a difference in this …