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Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… debate whether we need further measures. … When conducting genomics research, two essential values of scientific … a DNA sample can never be truly anonymized. To advance genomics research, NIH houses several databases where … of the research participants (see Genomic Data Sharing Policy  below). In addition, NIH issues Certificates of …
The Genomics Landscape
In the February 2, 2023 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., talks about the new NIH Data Management and Sharing (DMS) Policy and how it emphasizes the importance of good data management practices.
… going to be a very busy one for NHGRI and for the field of genomics more generally. Many of us felt like we got “shot … research and what he is excited about for the future of genomics. As the title of the profile says, Neil “unravels … date for the new NIH Data Management and Sharing (DMS) Policy occurred last month – January 25, 2023. The DMS Policy …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… define genomic data as an identifier. However, NIH has policy protections in place to mitigate the risk of … risks to participants, including the Genomic Data Sharing Policy and the NIH Policy for Issuing Certificates of Confidentiality . … What …
Event
On May 23, 2023, NHGRI will host a webinar: ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… topics: Overview of the NIH Data Sharing Management Policy Application of the DMS Policy to ELSI Research Data sharing templates and resources … elsi@mail.nih.gov . … NIH Data Sharing and Management Policy NHGRI’s Data Sharing Policies and Expectations NIH …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… non-human genomic data that are subject to the NIH GDS Policy to be submitted and released on the same timeline as … best practices for drafting informed consent documents for genomics research, see the NHGRI Informed Consent Resource . … policy commits to making research results available The Genomics Landscape - February 2, 2023 Genomic Data Sharing …
Policies and Guidance
For most of FY20, NHGRI’s extramural program will be operating under the 2011 National Human Genome Research Institute (NHGRI) strategic plan.
… the science of medicine through the implementation of genomics; and improving the effectiveness of healthcare. … including the ethical, legal and societal implications of genomics (ELSI) research, clinical implementation of … To facilitate the implementation of this NIH-wide policy, NHGRI is very flexible in the support of early stage …
Staff
Rebecca Hong is a scientific program analyst in the Policy and Program Analysis Branch at the National Human Genome Research Institute.
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… Rebecca Hong is a scientific program analyst for the Policy and Program Analysis Branch (PPAB) at the National … Institute (NHGRI). Her responsibilities in PPAB include policy analysis, policy development, coding and reporting, workshop …
Policies and Guidance
For FY21, NHGRI’s extramural program will be operating under the NHGRI 2020 Strategic Vision.
… Vision for Improving Human Health at the Forefront of Genomics" in Nature . The development of this vision involved … focused on the structure and biology of genomes; the genomics of disease; the implementation and effectiveness of … To facilitate the implementation of this NIH-wide policy, NHGRI is very flexible in the support of early stage …
Health
Genomic medicine involves using genomic information as part of clinical care and the health outcomes and policy implications of that clinical use.
… therapeutic decision-making) and the health outcomes and policy implications of that clinical use. Already, genomic … has called for the adoption of 'precision medicine,' where genomics, epigenomics, environmental exposure, and other data … in particular, is at the leading edge of incorporating genomics, as diagnostics for genetic and genomic markers are …
Staff
Cristina Kapustij is the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute.
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… Cristina Kapustij, M.S., is chief of the Policy and Program Analysis Branch at the National Human … branch’s efforts to understand the policy implications of genomics research and technologies, assess policy needs for … to the ethical, legal and social implications of human genomics research and develops policies to address these …