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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

Privacy in Genomics

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 …

Research Funding

Participating NIH ICs

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 … participant preferences, informed consent, governance, privacy and security, and data sharing); this includes …

News Release

New policy to protect research participants of NIH-funded research

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

Human Subjects Research

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

FAQ for Participants

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

Return of Research Results

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 …

Clinical Research

Bioethics Core/Institutional Review Board

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.

… (IRB) is responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural … of other institutes. … Human Subjects Research, Research Privacy, Privacy Of Research Participants, Clinical Trials, …

News Release

The Beacon Project works towards privacy protections

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 …