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FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… Resources ** Given the large number of resources available regarding the DMS Policy, where should … and 2) protective measures such as de-identification and  Certificates of Confidentiality  would be insufficient. Investigators and …
Clinical Research
The goal of this study is to learn more about the genetic contributions to the severity of disease of COVID-19.
… other COVID-19 related studies at the National Institutes of Health, visit: https://covid19.nih.gov/ . Si español es su … learn more about the genetic contributions to the severity of COVID-19. We hope to use this information to develop … to $70 for completing these study activities. Privacy and confidentiality are very important to us.  We know this is …
The Genomics Landscape
In the April 2020 edition of The Genomics Landscape, NHGRI Director Eric Green provides an update on the final stage of the Genomics2020 strategic planning process; the NIH website for COVID-19 information, the Gene documentary debut on PBS and more.
… you are doing well in these very unusual times. The spread of the novel coronavirus, COVID-19, has upended our lives in … (COVID-19) Notice of transition to new system for issuing certificates of confidentiality for non-NIH funded research NIH & NHGRI News …
Policy Issues
Hay leyes y políticas que sirven para proteger la privacidad de la información genómica de un individuo.
… de la Oficina Federal de Investigaciones ( Federal Bureau of Investigation , FBI) para las bases de datos de ADN de la … en Investigaciones ( Federal Policy for the Protection of Human Subjects ), también conocida como la " Regla Común … en 1966, la Ley de Libertad de Información ( Freedom of Information Act , FOIA) fue la primera ley estadounidense …
Research Training
Two-year fellowships for M.D.s and Ph.D.s in cytogenetics, biochemical genetics and molecular genetics.
… genetic tests important in the diagnosis and management of human genetic disorders. … To gain the requisite … laboratory experience, fellows rotate through a variety of CLIA-certified cytogenetic and molecular genetics … Human Genome Research Institute (NHGRI) National Institute of Allergy and Infectious Disease (NIAID) National Eye …
Healthcare Provider Genomics Education Resource
Genomics plays a role in every area of nursing, whether nurses are at the bedside providing one-on-one care, treating entire populations, teaching the next generation of nurses, or making discoveries in the lab.
… Dewell, Ph.D., MSc, RN Assistant Professor University of Northern British Columbia   … American Association of Critical-Care Nurses (AACN) defines entry-level nurses as … carrying out care.   Protection of rights of privacy and confidentiality: Privacy is the right to control access to …
News Release
NIH released a Request for Information seeking comments on the data submission and access process for dbGaP.
… Office of Science Policy … At the National Human Genome Research … with access to genomic data. The National Institutes of Health (NIH) Genomic Data Sharing Policy establishes a … genomics studies. Today, we need your help to improve one of NIH's central data sharing tools for human genomic data, …
Research at NHGRI
The Technology Transfer Office is responsible for transferring NHGRI technologies to the private sector and exchanging research materials with outside groups.
… academic, non-profit and private sectors for the benefit of the public health. … NHGRI's patented technologies are … microarrays for rapid molecular profiling, mouse models of inherited disorders and a diverse range of genes. … The … in negotiating Material Transfer Agreements (MTAs), Confidentiality Disclosure Agreements (CDAs) and other legal …
Clinical Research
An Observational Prospective Natural History Study of Metabolism, Infection and Immunity During the COVID19 Pandemic (At-home Participation).
… An Observational Prospective Natural History Study of Metabolism, Infection and Immunity During the COVID19 … is a serious public health problem and the implications of COVID19 in individuals with mitochondrial disease or their … updates with us after joining the study.   Privacy and confidentiality are very important to us. All information …
Staff
Jennifer Strasburger was the lead Genomic Program Administrator (GPA) for NHGRI as well as the co-chair for the NHGRI Data Access Committee (DAC).
… as a program director in 2020. She managed a portfolio of grants focused upon RNA epitranscriptomic modifications … development proposals to accelerate understanding of RNA function in complex biological systems and to harness … director in the National Cancer Institute’s Division of Cancer Biology, where she managed a portfolio of grants …