Search Results
The Genomics Landscape
In the June 2021 issue of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D. details the upcoming appointment of acting NHGRI Deputy Director, Vence Bonham Jr., J.D. and what it means for the institute.
… Last month, NHGRI convened the 93rd meeting of the National Advisory Council for Human Genome Research . … busy, including the presentation and discussion of four proposals (known as concept clearances) for potential … analyses of genome sequences and associated phenotypic information for millions of human participants will be …
Administrative
The Information Technology Branch provides leadership and service for information technology resources at NHGRI.
… The Information Technology Branch (ITB) provides leadership and service for all information technology (IT) resources for the National Human … LAN and WAN connections and administrative support of computer networks. Information Resource Management ITB researches federal and IT …
Policy Issues
Genetic information is used by law enforcement to investigate criminal acts and exonerate those who have been convicted of crimes they did not commit.
… Technological advances have made genetic and genomic tools faster, cheaper and more compatible with limited or older samples. Today, genetic information is used by law enforcement to investigate … information to exonerate those who have been convicted of crimes they did not commit. This page provides information …
News Release
NIH will support research that incorporates DNA sequence information into electronic medical records.
… A dozen awards from the National Institutes of Health will support research that incorporates DNA sequence information into electronic medical records. The goal of research conducted by the Electronic Medical Records and … immune system. They will use DNA sequencing to examine the genetic make-up of 2,500 individuals and combine this …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… It is essential to respect the rights and interests of research participants, given that 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 …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… This webpage discusses basic elements of informed consent that are required by the Common Rule (45 … statement that the study involves research, an explanation of the purposes of the research..." - 45 CFR 46.116 Potential … asking for your permission to collect samples and health information from you for a research study on [specific …
News Release
An online Informed Consent Resource created in 2009 by NHGRI has been updated to keep pace with advances in genomics over the past several years
… studies are increasingly integral to the advancement of a spectrum of disease-based research. As knowledge stemming from the completion of the Human Genome Project continues to expand, and genome … assembling one million volunteer participants whose genetic information will be studied to help advance …
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… and comprehension can be achieved in a variety of ways.  Genomics research requires careful explanation about how the participant’s genomic information will be used during and after the study, as well as any implications that arise from the sequencing of their DNA. …
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.
… remain about ethical, legal and social implications of the technology. People who are seriously ill may … 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 …
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 out of, the clinic. Yet most genetic tests today are not regulated, meaning that they go … Several federal agencies regulate genetic tests: the Food and Drug Administration (FDA), the …