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Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… to participate in the studies. This raises the question of when and how it is appropriate for the scientists to look … policymakers, and research participants about the return of individual research results (IRRs) and incidental findings (IFs) from genomic …
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 … … Related Projects … Dave Kaufman, Ph.D. … Dave Kaufman, return of results policy, ethical legal and social implications, …
Secondary Genomics Findings Service
How to send data, confirming preliminary results, and returning results
… After the SGFS has received your data in the form of a .vcf file, we will commence annotation. Each project can … send the PI a detailed report explaining the process and results of annotation. This report will indicate which … DNA saliva kit with instructions for saliva collection and return shipping material. Alternatively, your team is welcome …
Archive
… 2011 News Feature Nhgri Funds Return Of Results Studies Forms Expert Consortium … Archive …
Policy Issues
Revisions to the Common Rule modernize, simplify, and enhance oversight for human subjects research in the United States.
… The final version of the Common Rule was published in the Federal Register on … will share in the profit. A statement about whether results will be disclosed to participants. A statement to … Human Rights, Federal Laws Protecting Research Subjects, Return Of Research Results, Common Rule … Revisions to the …
News Release
NIH issues a notice seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing Policy.
… and Public Liaison Branch … Today, the National Institutes of Health (NIH) issued a notice in its Guide to Grants and … proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing (GDS) Policy. The proposed update to the GDS policy's data …
News Release
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy.
… way we manage data related to the NIH Genomic Data Sharing Policy to again allow unrestricted access to genomic summary results for most of the studies we support in order to advance health or …
Clinical Research
The Protocol Service Center provides assistance in the development and administration of study protocols requiring NIH Institutional Review Board approval.
… and staff in the development and administration of study protocols that require NIH Institutional Review … Research Participants, Clinical Trials, Genetic Disorders, Return Of Results, Genetic Discrimination … The Protocol Service Center …
Clinical Research
The Institutional Review Board (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.
… (IRB) is responsible for protecting the rights and welfare of the human subjects of research protocols that are … Research Participants, Clinical Trials, Genetic Disorders, Return Of Results, Genetic Discrimination … The Institutional Review …
Archive
… Assembling the Results: Transcript … Archive …