Search Results
News Release
NHGRI researchers asked patients, parents and physicians in the sickle cell disease community (SCD) what they wanted and needed to know about genome editing to make informed decisions about participating in genome-editing clinical trials.
… and hopefully do a better job of pinpointing what kinds of information will be most useful to potential research … children with the disease. These participants completed a genetic literacy survey, watched an educational video about … genome editing, study participants demonstrated higher genetic literacy levels than estimated. The NHGRI study …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… their contributions, such as samples and health-related information, are critical for the success of most human … storage and use of data. It may be useful to involve genetic counselors in the informed consent process, either … It is important to draw a distinction between targeted genetic research and broader genome sequencing, so that …
Policy Issues
Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.
… As the field of genomics advances, genetic and genomic tests are becoming more common in, and … Clinical Utility: Refers to whether the test can provide information about diagnosis, treatment, management, or … FTC’s primary mission is to enforce Section 5 of the FTC Act, which prohibits unfair or deceptive trade practices. A …
News Release
Four NIH grants will support research on the ethical, legal and social questions raised by genomics research advances and genomic information.
… research and the increasing availability of genomic information. The awards will fund researchers at … program. … The projects will examine the use of genomic information in the prevention and treatment of infectious … The work builds on previous NHGRI-supported research.  Genetic Privacy and Identity in Community Settings …
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… careful explanation about how the participant’s genomic information will be used during and after the study, as well … that must be met during this process are: providing key information. confirming the participant understands the information. ensuring any decision to participate is …
Clinical Research
The study collects genetic and medical information from people with GNE myopathy to understand the symptoms and clinical course of GNE myopathy.
… History Study of Patients with GNE Myopathy collects genetic and medical information from people with GNE myopathy. Patients are … Y, Sollogoub M, Blériot Y, Gahl WA, Huizing M, Butters TD. Non-specific accumulation of glycosphingolipids in GNE …
Policies and Guidance
NHGRI ensures that our website is in compliance with Section 508 of the Rehabilitation Act (29 U.S.C. 794d).
… Institute (NHGRI) makes every effort to ensure that the information available on our website is accessible to all … is in compliance with Section 508 of the Rehabilitation Act (29 U.S.C. 794d). … Section 508 requires that all … members of the general public) have access to and use of information and data comparable to that provided to …
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… Additionally, HIPPA and the Common Rule permit research on information from deceased individuals who did not provide … must authorize disclosure of individual health information, including individual research results.  It is … The Health Information Portability and Accountability Act (HIPAA) Privacy Rule mandates that individuals or …
About NHGRI
Information about how the NHGRI receives its funding and decides how to spend its annual budget.
… the entire genomes of other organisms; ongoing research in genetic science and technology; and a broad program that … explores the ethical, legal and social implications of genetic research, which informs the creation of policy recommendations on the use of genetic information. The NHGRI budget provides funding for a dynamic …
Educational Resources
Ancestry-informative markers are sets of polymorphisms for a DNA sequence found in different frequencies between populations from different geographical regions.