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News Release
American Indians and Alaska Natives IRB training programs at NIH ensure the welfare of people participating in federally regulated research.
… Mjoseth … Aha moments were among the unexpected outcomes of the Institutional Review Board (IRB) training program for … of the 3.5-month program, they discussed challenging ethical questions from the real world and tailored research … which enhances and creates new insights in the research I conduct on maternal and child health issues," Dr. Around Him …
News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… Sheena Faherty, Ph.D. … One goal of the 21st Century Cures Act, enacted December 13, 2016, was … information that is collected from participants as part of federally-funded research. … To implement one of the law's … which requires that all NIH-funded investigators who conduct sensitive, health-related human subjects research be …
Profile
In an interview, Boyer reflects on her NHGRI career, the history of the NHGRI ELSI Research Program and the exciting future of research at the interface of ethics and genomics.
… From pastor to program director in the Division of Genomics and Society, Joy Boyer concludes her … by the genomics research community. I've always thought of the ELSI Research Program as a kind of Rorschach test. … research and society through the institute’s fairly young Ethical, Legal and Social Implications (ELSI) Research …
Staff
Dr. Dave Kaufman is a program director Division of Genomics and Society​ at the National Human Genome Research Institute.
… National Human Genome Research Institute (NHGRI) in May of 2014, after working as an NHGRI ELSI grantee for several years. He oversees a portfolio of research and career development grants related to the ethical, legal and social implications of genomic research. …
Event
NHGRI is conducting three Zoom-based listening sessions to help gather information from the national medical genetics community regarding the current and future state of the medical geneticist workforce.
… genomics community regarding the current and future state of the clinical geneticist workforce. We will conduct these sessions to help us understand the community’s … steps to further discuss this topic. We hope that members of the genetics and genomics community can attend at least …
Research Funding
Polygenic RIsk MEthods in Diverse populations (PRIMED) Consortium will work together to develop and implement approaches to integrating extant genotype and phenotype data for the purpose of conducting and disseminating Consortium-wide PRS analyses.
… Grantees   Institution (Contact PI) PIs Title University of Maryland, Baltimore Sally Adebamowo*, Michele Ramsay, … and subsequent harmonization. The WG will also define data standards for consortium-generated data (e.g., ontologies for … best practices, and define consortium phenotype data standards. As phenotype-specific WGs are established, this WG …
Genetic Disorders
Myotonic dystrophy is an inherited type of muscular dystrophy that affects the muscles and other body systems.
… Myotonic dystrophy is an inherited type of muscular dystrophy that affects the muscles and other body systems. … Myotonic dystrophy is an inherited type of muscular dystrophy that affects the muscles and other body … neck and face that get worse over time. Signs and symptoms of myotonic dystrophy usually develop when a person is in his …
Staff
Dr. Lawrence Brody is a senior investigator in NHGRI's Social and Behavioral Research Branch and director of NHGRI's Division of Genomics and Society. ​
… Dr. Lawrence Brody studies the inherited components of human disease. He is interested in studying genetic … genetic variants that alter an individual's risk of developing specific conditions. These variants fall … genetic mutations, metabolic pathways, birth defects, ethical legal and social issues, BRCA1, BRCA2, breast cancer …
Educational Resources
Cloning is the process of making identical copies of an organism, cell, or DNA sequence.
… Cloning … Cloning is the process of making identical copies of an organism, cell, or DNA sequence. … DNA Sequence, … methods to make identical, or virtually identical, copies of an organism, cell or DNA sequence. The phrase “molecular …
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.
… Genomics Education Week , was a huge success. Dozens of healthcare professionals and over 700 other participants … understanding of genomics and related areas, such as the ethical, legal and social implications of genomics research. … actions designed to help GA4GH become a more influential standards body working toward unlocking the power of genomic …