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Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… reproductive decision-making. in designing an effective informed consent process for genomics research, researchers should …
Policy Issues
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… this webpage discusses basic elements of informed consent that are required by the common rule (45 cfr 46, … sample language that can be used as a guide when crafting informed consent forms. … these consent forms were used in …
News Release
An online Informed Consent Resource created in 2009 by NHGRI has been updated to keep pace with advances in genomics over the past several years
… important role must be thoughtfully considered and fully informed ," said laura lyman rodriguez, ph.d., director of … their contribution to any research activities." informed consent is the basic and primary tool through which …
Policy Issues
Per the NIH GDS Policy, informed consent documents for prospective data collection after January 25, 2015 should state what data types will be shared (e.g., genomic, phenotype, health information, etc.), for what purposes (e.g., general research use, disease-specific research use, etc.), and whether sharing will occur through open (unrestricted) or controlled access databases (or an approved alternative sharing plan).
… per the nih gds policy, informed consent documents for prospective data collection after … collected prior to january 25, 2015, nhgri recognizes that informed consent processes may not have explicitly …
News Release
The National Institutes of Health (NIH) Genomic Data Sharing Policy includes expectations for how researchers should obtain, share and access genomic data from human and non-human sources. As a leader in genomic policy development and implementation, the National Human Genome Research Institute (NHGRI) encourages data sharing practices that go beyond the NIH expectations.
… expectations. … in early 2020, nhgri will require explicit consent for future research use and broad data sharing of all …
Policy Issues
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… this webpage discusses genomics-relevant considerations for informed consent and provides guidance on how to approach them. it … and benefits of participating in a research project. … the informed consent process and consent form should reflect the …
Staff
Dr. Sara Chandros Hull is the director of NHGRI's Bioethics Core.
… projects focus on secondary genomic research findings, informed consent and datasharing for research for genomic research, …
Staff
Mr. Benjamin Berkman is the deputy director of NHGRI's Bioethics Core.
… … benjamin berkman, bioethics, institutional review board, informed consent , human biological samples … mr. benjamin berkman is …
Staff
Sonya Jooma is a health policy analyst in the Policy and Program Analysis Branch at the National Human Genome Research Institute.
… issues in genomics, including human subjects research, informed consent , genome editing and health disparities. in … ethical issues in genomics, human subjects research, informed consent , common rule, precision medicine … staff …
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.
… data to use data generated from sources with participant consent for unrestricted access or for general research uses … genomic data sharing policy for human and non-human data informed consent resources informed consent for genomics …