Additional Resources

This policy statement, released in March 2013 and reaffirmed in June 2018, contains recommendations on the genetic testing and screening of children developed collaboratively the American Academy of Pediatrics and the American College of Medical Genetics and Genomics.

This technical report, authored by Laine Friedman Ross, Howard M. Saal, Karen L. David, Rebecca R. Anderson, the American Academy of Pediatrics, and the American College of Medical Genetics and Genomics, outlines the ethical justification and cites empirical data in support of the proposed policy recommendations of the AAP and ACMG regarding genetic testing in children.

CERA selected the most frequently occurring journal titles among the 509 articles published between 2010 and 2019 within the ELSI Publications and Products Database of the ELSI Research Program at NHGRI for this information resource for the top forty ELSI publication outlets.

This NIH Guide Notice, announced on 12/2019, is in effect for applications submitted on or after 1/25/2021 and applies to new research projects deriving genomic data from human sources, such as specimens and cell lines.

This FAQ, provided by NHGRI, offers further information on the NHGRI implementation of the NIH Genomic Data Sharing Policy.

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.

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.

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.

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.

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.