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Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… however, it may not be practical or necessary for many studies. While informed consent is not required by federal … are generated through studies that include whole genome sequencing , whole exome sequencing, epigenetic … distinction between targeted genetic research and broader genome sequencing, so that participants understand the scope …
The Genomics Landscape
In the July 2023 edition of The Genomics Landscape, NHGRI Director Eric Green describes the evolution of the NHGRI Intramural Research program over the last three decades talks about its future in conducting truly exceptional basic, translational, and clinical genomics research.
… developed a new tool to help scientists study how a single genome creates all the distinct cells of the human body. The … change in development. Such a method will be valuable for studies aiming to understand traits informed by many genetic … 99 th meeting of the National Advisory Council for Human Genome Research, as did the co-chairs of the Blue Ribbon …
Staff
Dr. Chris Gunter is a senior advisor to the NHGRI director on genomics engagement.
… with a focus on behavioral conditions.  Given the wide range of methods for communicating science, how can we … VB, Brody LC, Hutter CM, Manolio TA, & National Human Genome Research Institute. Strategic research priorities and … 2008. [ PubMed ] NCI-NHGRI Working Group on Replication in Association Studies, Chanock SJ, Manolio T, Boehnke M, …
Media Advisory
On January 25, 2023, the National Human Genome Research Institute will host a virtual roundtable to discuss social and behavioral genetics and genomics, including their benefits, limitations and potential for misuse.
… The National Human Genome Research Institute (NHGRI) of the National Institutes … behavior. Panelists will discuss genetics and genomics studies that may be stigmatizing as well as strategies for … Wednesday, Jan. 25, 2022, 1 p.m. EST  … Visit https://www.genome.gov/event/social-and-behavioral-genomics to register. …
The Genomics Landscape
In the February 12, 2021 edition of The Genomics Landscape, Dr. Eric Green talks about the 20-year anniversary of the publications that reported the draft human genome sequence.
… Vision — Generating and analyzing a complete human genome sequence will be routine for any research laboratory, … to genomic resources, generate educational materials for a wide range of communities, and insist that clinical … COVID-19 vaccines in the U.S. Dr. Collins joins National Association of Evangelicals President Walter Kim on the …
Media Advisory
NHGRI will host a two-day symposium addressing historical and present-day constructions of disability and ableism, with a focus on the history and lived experiences of people with disabilities in the context of genomics and genetics.
… For Immediate Release … The National Human Genome Research Institute (NHGRI) of the National Institutes … Michael Rembis, director of the Center for Disability Studies and an associate professor in the Department of … virtual symposium will be virtual.  To register, visit genome.gov/disability-and-genomics . … Please note: Sign …
Policies and Guidance
Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.
… access. … Whenever possible, NHGRI strongly encourages studies involving human data to use data generated from … to single nucleotide polymorphism (SNP) array data, genome sequence data, transcriptomic data, epigenomic data, … … NOT-HG-21-022 : Notice Announcing the National Human Genome Research Institute’s Expectation for Sharing Quality …
Explainer
Appropriate use of population descriptors in research is a critical scientific issue that is important for advancing genomic science and improving healthcare across human populations.
… we do. Simply stated, the design of some genomic research studies has exacerbated scientific flaws due to how data are … ways in which people can differ from one another. A wide variety of population descriptors are used to describe … to look at the frequency of DNA variants across the genome. The definitions, measurement, uses and …
Policy Issues
Genome editing is currently being applied to research on cancer, mental health, rare diseases, and many other disease areas.
… Genome editing is currently being applied to research on … organisms such as mice or zebrafish. Researchers rely on genome editing tools as a way to explore the connection … help researchers determine if specific changes made to the genome contribute to the disease. It can also lead to the …
News Release
Three practical strategies for reducing the risk of re-identification, the process by which anonymized personal genomic data are matched with the owner.
… in the Journal of the American Medical Informatics Association compares three practical strategies for reducing … & Health (GA4GH) and funded in part by the National Human Genome Research Institute (NHGRI). The Beacon Project tests … C or G) exists at a particular chromosome location in any genome in a given beacon, but keeps all other sequence data …