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News Release
NHGRI researchers asked patients, parents and physicians in the sickle cell disease community (SCD) what they wanted and needed to know about genome editing to make informed decisions about participating in genome-editing clinical trials.
… were published this week in the journal AJOB Empirical Bioethics . “An important goal of informed consent is to … a person’s values,” said Sara Hull, Ph.D., director of the Bioethics Core at NHGRI. “By talking to sickle cell disease …
News Release
American Indians and Alaska Natives IRB training programs at NIH ensure the welfare of people participating in federally regulated research.
… faculty member of the NIH Clinical Center's Department of Bioethics and director of the National Human Genome Research Institute's (NHGRI) bioethics core. "I began to understand that American Indians … part in research seminars offered by the NIH Department of Bioethics. "Mariddie and I learned a lot from each other, and …
News Release
Four NIH grants will support research on the ethical, legal and social questions raised by genomics research advances and genomic information.
… to bring together experts in wide-ranging fields - bioethics, law, behavioral and social sciences, epidemiology, … and colleagues at the Johns Hopkins Berman Institute of Bioethics and Johns Hopkins University in Baltimore will use …
Staff
Sheethal Jose is a program director in NHGRI's Division of Genomics and Society.
… Science from the University of Virginia and a Ph.D. in Bioethics and Health Policy from the Johns Hopkins Bloomberg … School of Public Health and the Berman Institute of Bioethics. Visit the ELSI Research Areas webpage for more …
Staff
Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI)
… and Development (NICHD). She received her master’s in Bioethics and Science Policy with a focus on Genetics and …
Clinical Research
The Protocol Service Center provides assistance in the development and administration of study protocols requiring NIH Institutional Review Board approval.
… close working relationships with the NIHIRB, the NHGRI Bioethics Core, and the NIH Office of Human Subjects Research …
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.
… Rosemarie Garland-Thomson, professor emerita, English and bioethics, Emory University Dennis Tyler, Fordham University …
Event
NHGRI and the University at Buffalo Center for Disability Studies will hold a two-day symposium on October 6-7, 2022 to address historical constructions of disability and ableism, with a focus on the “irreducibility” of individuals with disability and the history of disability.
… Opening Remarks Session One: Key Concepts for Research and Bioethics Moderator: Christopher Donohue, NHGRI 10:20 a.m. to …
Professional Development Programs
The JHU/NHGRI Genetic Counseling Training Program prepares students for a M.S in Genetic Counseling from Johns Hopkins Bloomberg School of Public Health.
… public health, public policy, research methodology, bioethics and health communication and decision-making. The …
News Release
The Genomics and Society: Expanding the ELSI Universe conference focused on issues arising from the ethical, legal and social implications of genomic research.
… genes, ancestry and identity; Wylie Burke , Professor of Bioethics and Humanities at the University of Washington on …