Search Results
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… topics in the database include employment and insurance discrimination, health insurance coverage, privacy, research, … Cornell Legal Information Institute This website allows users to search for … team keeps this database up to date. National Society of Genetic Counselors To find information about state genetic …
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.
… analyses of genome sequences and associated phenotypic information for millions of human participants will be … our current natural history study on patients with a rare genetic disease, familial platelet disorder. Our goals – … analyses of genome sequences and associated phenotypic information for millions of human participants will be …
About NHGRI
The Genomics and Society Working Group advises on planning and priorities for genomics and society activities at NHGRI.
… In Genomics, Genomics Legislation, Privacy And Genomics, Genetic Information Non-discrimination Act (GINA) …
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 … and administrative support of computer networks. Information Resource Management ITB researches federal and IT … ITB provides technology support to the NHGRI community. Information Assurance ITB ensures that NHGRI operates within …
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 … should be included in DNA databases, what materials and information should be stored and the circumstances for when …
News Release
NIH will support research that incorporates DNA sequence information into electronic medical records.
… will support research that incorporates DNA sequence information into electronic medical records. The goal of … she said, and ways in which doctors might use this information to improve clinical treatment and practice. These … 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.
… their contributions, such as samples and health-related information, are critical for the success of most human … for genomics research, researchers should consider the information participants may need to understand risks and … storage and use of data. It may be useful to involve genetic counselors in the informed consent process, either …
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
… assembling one million volunteer participants whose genetic information will be studied to help advance understanding … counselors and institutional review board members with non-scientist participant advocates. "Over the past five …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… asking for your permission to collect samples and health information from you for a research study on [specific … asking for your permission to collect samples and health information to be stored in a research biobank and used for … your participation in a study involving samples and health information you provided for [insert name of previous project …
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 …