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.

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This white paper prepared by Det Norske Veritas (DNV GL), a quality assurance and risk management company, identifies 6 barriers to the uptake of dynamic consent in clinical genetics.

  • white paper
  • risk management
  • Consent
  • clinical genetics
  • precision medicine

An international commission convened by the U.S. National Academy of Medicine, the U.S. National Academy of Sciences, and the U.K. Royal Society, with the participation of other academies from around the world, released a framework for assessing the use of human germline genome editing on September 3, 2020. This link provides access to a number of resources including the report summary, recommendations, and a webinar.

  • NASEM
  • ELSI
  • report
  • consensus study
  • workshop proceeding

The National Academies of Sciences, Engineering, and Medicine released a report in September 2020 that provides a blueprint and eight overarching strategies for improving healthcare for people living with sickle cell disease (SCD) in the United States. This link provides access to a number of resources including report highlights and an overview of recommendations.

  • NASEM
  • ELSI
  • report
  • consensus study
  • workshop proceeding

This November 2020 white paper from the All of Us Research Program, funded by the National Institutes of Health (NIH), details key insights from the 2019 ELSI Research Priorities Workshop and outlines a plan to operationalize the identified priorities.

  • white paper
  • All of Us
  • research program
  • NIH
  • ELSI research
  • workshop

An international commission comprised of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the Royal Society of the United Kingdom, prepared this report detailing the potential benefits, harms, and uncertainties of heritable human genome editing technologies.

  • NASEM
  • ELSI
  • report
  • consensus study
  • workshop proceeding

This National Academies Press publication summarizes the proceedings of the Second International Summit on Human Genome Editing, convened on November 27-29, 2018 by the U.S. National Academy of Medicine, U.S. National Academy of Sciences, the Royal Society of the United Kingdom.

  • NASEM
  • ELSI
  • report
  • consensus study
  • workshop proceeding

This National Academies of Sciences, Engineering, and Medicine report summarizes a February 2013 workshop, convened by the Committee on National Statistics in the Division of Behavioral and Social Sciences and Education of the National Research Council to explore how population surveys such as the National Health and Nutrition Examination Survey should report results from genomic research using stored specimens as well as address informed consent for both future data collection and the use of banked specimens.

  • NASEM
  • ELSI
  • report
  • consensus study
  • workshop proceeding

This 2004 report by the National Research Council concludes that security against bioterrorism is best served by continuing policies that allow scientists and the public unrestricted access to genome data on microbial pathogens.

  • NASEM
  • ELSI
  • report
  • consensus study
  • workshop proceeding

The Institute of Medicine of the National Academies authored this 2014 assessment of the oversight function of the NIH and the NIH Recombinant DNA Advisory Committee (RAC) over human gene transfer research.

  • NASEM
  • ELSI
  • report
  • consensus study
  • workshop proceeding

This National Academies Press publication summarizes the proceedings of workshop on ethical issues in clinical trials for gene therapies. This workshop was convened by the Forum on Regenerative Medicine of the National Academies of Sciences, Engineering, and Medicine on November 13, 2019.

  • NASEM
  • ELSI
  • report
  • consensus study
  • workshop proceeding