On the report of the ASHG “Facing Our History—Building an Equitable Future” initiative

Summary

The American Society of Human Genetics (ASHG)—and the research community it supports—believes in the power of human genetics to advance science, health, and society. However, ASHG and the field have failed to acknowledge, fully and consistently, the misuse of human genetics to serve unjust ends or take action to denounce such use. As the community’s oldest and largest professional society, ASHG also has been late in making explicit efforts to integrate equity, diversity, and inclusion into its values, programs, and voice. The Society affirmatively seeks to reckon with, and sincerely apologizes for, its involvement in and silence on the misuse of human genetics research to justify and contribute to injustices in all forms. It commits to sustain and expand its integration of equitable and just principles in the study and use of human genetics research, taking both immediate actions and swiftly determining longer-term goals it will set to realize the benefits of human genetics and genomics research for all.

Confronting our past

Launched in 2021, the “Facing Our History—Building an Equitable Future” initiative and the report¹ emerged from the height of the social and racial reckonings in 2020. At that time, ASHG’s board of directors identified a specific, compelling, overdue need to acknowledge and provide examples of how theories and understandings of human genetics have been used to feed and justify racism, eugenics, and other systemic forms of injustice. The board identified the importance of focusing specifically on examples of ASHG’s role in fostering or failing to rebuke harms and on steps The Society could take to address findings.

The resulting report that ASHG released is humbling and painful. It acknowledges participation of early ASHG leaders in the harmful scientific and societal practices of the American eugenics movement. ASHG also actively rejected opportunities to decry the misuse of genetics for unjust ends and engaged in only occasional community communication on these issues that was too often halting, brief, reactive, or equivocal. Report findings document examples of the profession’s history of past harms inflicted on members of minoritized groups and relay that the Society’s silence at crucial policy moments was a choice, a fault of omission. In recent decades, and sometimes propelled primarily by external and internal pressure, the Society and field have begun to take more consistent, meaningful steps toward equity, as well as inclusion of new voices and perspectives.

ASHG apologizes, builds pathway for equity

The ASHG Board of Directors acknowledges and apologizes, deeply and sincerely, for the participation of some ASHG founders, past presidents, and other leaders in promoting eugenic ideals that harmed people of minoritized groups. The board also apologizes for ASHG’s reticence and silence at times when it could have publicly refuted the misuse of genetics to feed discrimination and racism. The board of directors acknowledges the harms and inactions documented in the report and decries that genetics has been used to advance systemic harms against people of many marginalized communities, including those based on “race” and ancestry, religious affiliation, indigenous ancestry, LGBTQ+ identities, and ability. ASHG also acknowledges that the report cannot fully convey the concrete harms experienced by specific individuals and communities: behind each example of an unjust policy or action in the report are real people and targeted communities who experienced harm and whose lives were affected because of contributions or inactions by human geneticists.

The report contains two sets of “insights for action,” and the first, “reckoning with ASHG’s history,” offers those that ASHG should address promptly. In addition to its sincere apology, the Society endorses immediate steps.

• -Public acknowledgment and action: The Society will incorporate the “Facing Our History—Building an Equitable Future” report and this statement into public sections of ASHG’s website and will publish it in the Society’s flagship scientific journal, The American Journal of Human Genetics. This step ensures the findings and statement will be accessible to the public ASHG serves and become part of the transparent scientific record for future generations to read and learn. ASHG will also continue its recent actions to prioritize diversity, equity, and inclusion in its public policy and communications agendas.
• -Integration into ASHG scientific and training programs: ASHG commits to consistently incorporate lessons learned from this report throughout its professional and scientific programming, including content in ASHG’s annual meeting, journals, and training initiatives. This will enable our community to build a more just future borne from knowledge of historic failings, better integrate equitable and just principles into future research, and actively oppose the misuse of human genetics research. ASHG will also prioritize existing and new programs to engage, train, and retain researchers from historically marginalized communities.
• -Leadership pipelines and award recognition: The Society will continue to increase and sustain the diversity of its leadership to ensure robust inclusion of diverse voices and perspectives. Additionally, given the report’s findings of specific individuals involved in the American eugenics movement, the board is immediately suspending the use of any individual’s name for ASHG professional awards. It will evaluate current award names for consistency with today’s ASHG values and vision and announce changes in 2023.

The report also identifies a second set of longer-term actions, “building an equitable future,” the Society should consider. As the report indicates, ASHG agrees there must be a consultative process to assess and determine additional ways the Society will incorporate findings throughout its work, consistent with its mission and resources. The board will seek input, identify options, and communicate additional concrete actions as part of the Society’s upcoming 2024–2028 strategic plan.

Looking forward

With this report release and statement, ASHG embraces its values of equity and inclusion, develops an enduring resource to acknowledge and educate about past misuses and harms, and will explicitly integrate equitable values into research endeavors and strive to anticipate and oppose malevolent uses. It urges the larger human genetics community to engage in similar individual and institutional reflection and action. ASHG encourages individual members, peer societies, academic centers, agencies, industry partners, and others to reflect on how everyone’s contributions will help foster inclusive equity agendas. In pursuit of these goals, the community will confront challenges we can and must overcome within human genetics and the larger scientific endeavor. These include how to help researchers consider harmful uses early in scientific investigations and ward against them, improving and sustaining effective public communication, denouncing the warping of science for advocacy agendas, and how to better train scientists to engage publicly. Progress on these fronts will take sustained leadership from countless individuals and organizations, yet collectively we can create change.

Finally, the board of directors affirms the value of human genetics research and its full beneficial potential. This knowledge is generating transformative clinical and scientific applications and offers a foundation for future advances to stem the human toll of conditions affecting millions of families worldwide. Yet that endeavor can succeed only if it fully incorporates and celebrates diverse human experience and perspectives, and it must redouble efforts to engage researchers and participants from all backgrounds and earn trust with all communities. ASHG recommits to support these purposes, which will be vital to the next 25 years of human genetics progress.