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Clinical Research
The Institutional Review Board (IRB)Â is responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural investigators in NHGRI and a number of other institutes.
… (IRB) is responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural investigators in NHGRI and a number of other institutes. … Oversight for human subjects research …
Research Funding
The IGNITE PTN supports a network of multi-site clinical groups involving diverse settings and populations to conduct two pragmatic clinical trials of genomic medicine interventions.
… in diverse clinical settings. The first phase of the network, IGNITE I , was a consortium of collaborative genomic medicine pilot Demonstration … Center (CC) involving diverse settings and populations to conduct pragmatic clinical trials of genomic medicine …
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, … maintain data harmonization procedures, and update data standards. With the goal of supporting cross-Consortium and … input is needed. Population Descriptors, Social and Ethical Implications (POPSEI) Co-chairs: Genevieve Wojcik, …
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 …
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. …
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 …
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 …
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 …
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.
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… 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 …