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Explore our curated collection of resources including top publication outlets for ELSI scholars, Centers of Excellence in ELSI Research, ELSI databases and research centers, genome research consortia, statutes and legislation related to genomics, and bioethics resources.

1001 - 1010 of 1099 Additional Resources

  • The National Center on Disability and Journalism at Arizona State University’s Walter Cronkite School of Journalism and Mass Communication provides a style guide for journalists and other communicators writing about disability. The guide was last updated in the summer of 2021.

    • disability
    • Journalism
    • Journalism / Mass Media Ethics
    • Language

  • The Polygenic Risk Methods in Diverse Populations (PRIMED) Consortium (comprised of NIH program staff, affiliate members, investigators at 7 study sites, and a Coordinating Center) is funded by the National Institutes of Health to develop and evaluate methods improve the predictive capacity of polygenic risk scores for populations of diverse ancestry. ELSI activities in PRIMED are expected to explore the implications of integrating heterogeneous datasets and generating PRS data which may differentially impact individuals of diverse ancestry. This will include considerations of how to conceptualize and use ancestry and other population descriptors in PRS methods development and applications.

    • Polygenic risk scores
    • precision medicine
    • diversity
    • Genetic Risk
    • multi-site

  • A team of researchers from the Dolan DNA Learning Center of Cold Spring Harbor Laboratory created the Image Archive on the American Eugenics Movement website to host 2,500 photos, correspondence, journals, texts, manuscripts, charts, and data. The Archive was created between 1998-2004 with funding from the ELSI Program of the NHGRI. 

    • Eugenics
    • Bioethics History
    • eugenics movement

  • "The Meaning of Eugenics: Historical and Present-Day Discussions of Eugenics and Scientific Racism" was a two-day virtual symposium convened by the NHGRI in December 2021 and led by NHGRI Historian Christopher Donohue, PhD, and Oxford Brookes University Professor Marius Turda, PhD. The recorded presentations and slides are available online.

    • Eugenics
    • modern genomics
    • scientific racism

  • This NIH webinar describes the applicability of the 2023 DMS policy, discusses data sharing considerations, and describes how to prepare a Data Management and Sharing Plan.

    • 2023 NIH Data Management and Sharing Policy
    • data sharing
    • webinar
    • National Institutes of Health (NIH)

  • This slide deck, which defines scientific data, lists allowable justifications for limiting data sharing, reviews elements of a DMS Plan, and covers other topics, was presented in Part 1 of the Conversations with NIH Webinar Series.

    • 2023 NIH Data Management and Sharing Policy
    • data sharing
    • National Institutes of Health (NIH)

  • This NIH website provides answers to frequently asked questions about the 2023 DMS policy such as those about sharing qualitative data, how noncompliance will be handled, protection of research participants, and other topics.

    • 2023 NIH Data Management and Sharing Policy
    • data sharing
    • qualitative data
    • compliance

  • This NIH webinar provides guidance on privacy protections for human subjects and considers the interaction of the 2023 DMS policy with the NIH Genomic Data Sharing Policy

    • Genomic Data Sharing Policy
    • 2023 NIH Data Management and Sharing Policy
    • data sharing
    • National Institutes of Health (NIH)
    • webinar

  • This slide deck, which covers the informed consent process, harmonization of the 2023 DMS policy with the NIH Genomic Data Sharing Policy, sharing of American Indian/ Alaska Native participant data, and other topics, was presented in Part 2 of the Conversations with NIH Webinar Series.

    • 2023 NIH Data Management and Sharing Policy
    • data sharing
    • National Institutes of Health (NIH)
    • Genomic Data Sharing Policy

  • This NIH website lists and provides full-text links to all notices related to data sharing, such as, for example, the final NIH 2023 DMS policy, a notice pertaining to management and sharing of American Indian/ Alaska Native participant data, allowable data management and sharing costs, etc.

    • 2023 NIH Data Management and Sharing Policy
    • data sharing
    • National Institutes of Health (NIH)