ASHG launches major initiative to understand, document experiences of past injustice in human genetics research

The American Society of Human Genetics (ASHG) today announced a major year-long initiative to understand and document experiences of past injustice, as well as progress toward justice, in the human genetics research field and the Society. With this important step, the Society underscores its commitment to greater diversity, equity and inclusion as a vital element of ASHG’s vision that people everywhere realize the benefits of human genetics and genomics research.

The project will be undertaken by an expert panel of human geneticists, historians, clinician-scientists and social scientists who will review findings, convene dialogues and produce a final report outlining findings and providing insights that can shape future field-wide priorities. The project, titled “Facing our History—Building an Equitable Future,” will draw on a wider range of stakeholders and experts in its dialogue and also engage the ASHG membership during the ASHG 2022 Annual Meeting and other field forums.

“As we strive to realize the tremendous health benefits of genetic knowledge, we must also pledge to acknowledge eugenics, racism, and other systemic inequities and their effects on the genetics and genomic community and society at large,” said ASHG President Gail Jarvik, MD, PhD.

As scientists, we disavow eugenics and its underlying racist foundation, yet historic field beliefs, actions and statements contributed to legacy views that have now been discredited and that are inconsistent with ASHG’s values. For this reason, we must continue to be visible in our rejection of eugenics and racism, and we must be honest in addressing human genetics’ past. This project is one of many ways the Society is embracing a deep commitment to equity and incorporating it as a scientific and community imperative. Together, we can move the field forward by rejecting discredited notions that divide our one humanity and by embracing an inclusive vision for profound health benefits of genetic research.”

Gail Jarvik, MD, PhD, President, ASHG

In April 2021, the ASHG Board of Directors approved an updated Diversity, Equity and Inclusion Action Plan that authorized this important project, and that also maintains a strong focus on diversifying the human genetics research workforce; building community and increasing diversity within the Society; and promoting increased engagement of diverse populations in research. The Society has also enhanced topical discussion of equity and inclusion in genetics research throughout its annual meeting program and scientific journal priorities. The work is guided by the Society’s Diversity, Equity and Inclusion Task Force that has been chaired by Dana Crawford, PhD of Case Western Reserve University with incoming Chair Neil Hanchard, MBBS, D.Phil of the National Human Genome Research Institute.

The "Facing our History—Building an Equitable Future" Expert Panel’s composition is:

Members

• Neil Hanchard, MBBS, D.Phil, National Human Genome Research Institute, Clinical Investigator, Center for Precision Health Research; Head, Childhood Complex Disease Genomics Section (Group Facilitator serving ex-officio)
• Katrina Claw, PhD, University of Colorado School of Medicine, Assistant Professor, Medicine-Bioinformatics
• Tshaka Cunningham, PhD, Chief Scientific Officer, TruGenomix Health Inc.
• Evelynn Hammonds, PhD, Harvard University, Chair, Department of the History of Science
• Gail P. Jarvik, MD, PhD, University of Washington, Head and Professor, Division of Medical Genetics; Arno G. Motulsky Endowed Chair in Medicine; Joint Professor of Medicine and Genome Sciences (ex-officio)
• Rick Kittles, PhD, City of Hope, Associate Director of Health Equities, Comprehensive Cancer Center; Professor and Director, Division of Health Equities, Department of Population Sciences
• David L. Nelson, PhD, Baylor College of Medicine, Cullen Foundation Professor in Molecular Genetics
• Robert Nussbaum, MD, Chief Scientific Officer, Invitae
• Charmaine Royal, PhD, Duke University, Robert O. Keohane Professor of African & African American Studies, Biology, Global Health, and Family Medicine & Community Health
• Timothy Thornton, PhD, University of Washington and Senior Director, Statistical Genetics and Machine Learning, Regeneron Genetics Center
• Sarah Tishkoff, PhD,University of Pennsylvania, David and Lyn Silfen University Professor in Genetics and Biology, Director of the Penn Center for Global Genomics and Health Equity
• Digna Velez Edwards, PhD, Vanderbilt University, Division Director Quantitative Sciences, Director, Women’s Health Research
• Ambroise Wonkam, MD, PhD, University of Cape Town, professor of medical genetics, Director of GeneMAP (Genetic Medicine of African Populations), and immediate past Deputy Dean Research at the Faculty of Health Sciences

Senior staff

• Chazeman S. Jackson, PhD, MA, American Society of Human Genetics, Senior Director for Diversity, Equity and Inclusion

Updates on the panel’s events and meetings will be provided via ASHG’s website and other communications channels. Opportunities for member engagement will also be scheduled in 2022.