Search Results
The Genomics Landscape
In the July 2020 edition of The Genomics Landscape, NHGRI Director Eric Green recalls the White House event announcing the draft human genome sequence.
… Genomics Research NIH researchers uncover genes linked to common recurrent fever in children How the genetic code was … and no computers NIH study shows genomic variation causing common autoinflammatory disease may increase resilience to … sequence human genome, Human Genome Project, International Common Disease Alliance (ICDA), Richard Woychik, …
Educational Resources
Hemophilia is an inherited disease, most commonly affecting males, that is characterized by a deficiency in blood clotting.
Jobs at NHGRI
NHGRI is seeking exceptional candidates for the position of Genetic Epidemiologist in the Division of Genomic Medicine (DGM). The division focuses on understanding how genomics contributes to human health and disease and how this knowledge can translate into improving the diagnosis, treatment, and prevention of disease.
… natural history, prevention, and treatment of genetics of common, complex diseases. Application Deadline: March 8, … in biostatistics, and in the epidemiology and genetics of common, complex diseases. Prepare solicitations of grant … natural history, prevention, and treatment of genetics of common, complex diseases. … NHGRI is seeking exceptional …
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… to the current definition of "human subject" in the Common Rule, informed consent is not required for use of samples and … informed consent process. Additionally, HIPPA and the Common Rule permit research on information from deceased …
Policy Issues
Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.
… Policy for the Protection of Human Research Subjects, or 'Common Rule' ( Code of Federal Regulations, Title 45, Part 46 ). … rights and protections for participants in research. The Common Rule requires informed consent , where an …
News Release
American Indians and Alaska Natives IRB training programs at NIH ensure the welfare of people participating in federally regulated research.
… aha moment came when she reviewed the January 2017 final rule for the Federal Policy for the Protection of Human Subjects, 45 C.F.R. 46 Subpart A, also known as the Common Rule *. The new Common Rule revisions modernize, simplify, and enhance …
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… to participate is voluntary and not coerced. One common component of informed consent is the “consent form,” …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… research participants’ privacy. Federal laws like the Common Rule and the Health Insurance Portability and … not subject to the informed consent requirements of the Common Rule. However, some groups raised concerns about this …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… that govern biomedical research (i.e., HIPAA and the Common Rule) do not explicitly define genomic data as an identifier. … to legally effective informed consent as required by the Common Rule (45 CFR 46, Subpart A) for which general …
Policy Issues
In June 2013, the Supreme Court determined that DNA in its natural form cannot be patented.
… non-obvious; certainly by the late 1990s the practice was common place. Despite the criticism, DNA patenting has proven …