Additional Resources

The National Human Genome Institute’s Oral History Collection features video-recorded discussions with influential figures in the field of genomics and the history of the institute. Intended for researchers and scholars, each video includes extensive conversation about science and medicine, biographical details of the participants, and insights into the inner workings of institutions and initiatives.

Ethical, Legal, and Social Issues Archive, US Department of Energy (DOE) The United States Department of Energy (DOE), an integral partner to the National Institutes of Health (NIH) in the Human Genome Project, created the ELSI Archive to ensure future access to a variety of the ELSI materials it produced, such as ELSI articles in Human Genome News and a bibliography of ELSI publications produced prior to 1995.

The African Society of Human Genetics (AfSHG) aims to equip the African scientific community and policymakers with the information and practical knowledge they need to contribute to genomics research and attract global attention to the efforts of African scientists.

The Policy Partnerships Project for Genomic Governance (P3G2) develops and supports policy, ethical and governance frameworks of biobanks, genomic research databases and other similar health and social research infrastructures so as to optimize cross-border access and use. Originating as a consortium and operated as a not-for-profit corporation, P3G2 now undertakes its activities as part of the Centre of Genomics and Policy (CGP) at McGill University.

The European Society of Human Genetics (ESHG), a non-profit organization, aims to promote research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims, particularly those working in Europe. The society organizes the annual European Human Genetics Conference and publishes the European Journal of Human Genetics.

Human Genome Organisation (HUGO) International promotes genomic research within and between nations; fosters scientific exchange, with emphasis on scientifically developing and emerging countries; and supports discourse in the ethics of genetics and genomics.

The Global Alliance for Genomics and Health (GA4GH) is an international, non-profit alliance of 600+ organizations working to create frameworks and standards to enable the responsible, voluntary, and secure sharing of genomic and health-related data. Find genomic data, regulatory and ethics, and data security toolkits on the GA4GH website.

GeneWatch UK is a nonprofit policy research and public interest group that monitors the impact of genetic technologies on food, health, agriculture, environment, and society. GeneWatch UK is funded by charitable trusts, the European Commission, commissioned work, and donations and is headed by Executive Director, Helen Wallace.

The 2020 Public Attitudes Toward Genetics & Genomics Research Literature and Polling Review Report was produced by Jameson Communications for the American Society of Human Genetics (ASHG) to inform ASHG’s public education and engagement work and serve the broader field.

The LawSeq℠ team, overseen by co-principal investigators Susan Wolf, JD, Ellen Wright Clayton, MD, JD, and Frances Lawrenz, PhD, has curated this database of articles from journals and professional society publications that are useful for understanding genomics law.