By ASHG President Brendan Lee, MD, PhD
Brendan Lee, MD, PhD
In January, ASHG released an important report and statement of the Board of Directors documenting painful contributions to past harms associated with human genetics as well as progress being made over decades to address equity in our research community. I want to use this column—to you, our members— to reflect on the report, and the Board’s statement, for each of us as individuals in all our roles – as scientists, mentors, institutional leaders, reviewers, funders, and citizens – and how it serves as a foundation for a more equitable future.
As you may know, the Board’s statement included an overdue apology in a statement for the participation of some of its early leaders in the American eugenics movement, as well as the Society’s failure to consistently acknowledge and oppose harms and injustices tied to the field. I stressed in January the importance of this work in its own right, and as part of a journey by our community.
We all have a role to play. As a professional society, ASHG undertakes this work on behalf of the field, and as an organization the Board is actively discussing how we will continue to advance human genetics and genomics research by ensuring a more accessible, equitable and inclusive field. In addition to broad work of the field, each of us can take small steps that can ultimately make a big difference as we realize the full benefits of human genetics for people everywhere.
Swift actions individual scientists can take to help advance DEI in human genetics
As examples, I want to highlight just a few of the places we are already seeing change in the landscape, all of which depend on the continued actions of individual researchers. We encourage you to identify more of ways you can and will engage:
Scientific Dialogue: I am deeply struck by the changing nature of discussion regarding what merits scientific investigation in our community. As the pages of the American Journal of Human Genetics (AJHG) and Human Genetics and Genomics Advances (HGGA) attest, the research community is increasingly cognizant of the deficits in equitable research participation and although there is much further to go, our members’ work highlights growing attention to diversity, equity and inclusion in the research we conduct and that ASHG journals publish. A recent AJHG collection highlights a set of papers in recent years and HGGA has made it a priority to highlight commentary and emerging science related to diverse populations and genetics. Likewise, the Annual Meeting content has a tangible sense of evolution in the last four to five years, which must continue.
For individual Reflection: As you consider your research agendas, how can and will you consider facets of equity in your research? ASHG online training programs offer a growing array of topics to help guide and inform these questions and we encourage you to take advantage of those and other new ASHG resources to come.
Advocacy: As you will read in the pages of this issue of The Messenger, ASHG has made inclusion of historically underrepresented populations a significant policy priority and we have made early progress on a long-term goal to change the nature of engagement with populations we seek to include in human genetics and genomics research. We are also anticipating several upcoming ASHG commentaries that will engage on questions of inclusion and equity in genetics and genomics. With a new class of trainees in the Advocacy Certificate for Genetics Trainees Program, many of them are already articulating their personal and scientific interest to advance equity in science.
For individual Reflection: In your own professional roles, how can and will you speak up for equity in the public sphere or in public engagement you undertake as an individual researcher? Check out ASHG advocacy and policy resources to help you with these efforts.
Recognizing excellence across our community: One specific change the Board has recommended centers on ASHG’s awards program. Given the report’s findings regarding specific individuals involved in the American eugenics movement, the ASHG Board has immediately suspended the use of any individual’s name for ASHG professional awards. The Board is evaluating the future of its award names and will announce changes later this year. Yet recognizing achievement across the human genetics community remains one of ASHG’s major activities and we have the opportunity to think more broadly about what scientific excellence, lifelong leadership, mentorship, and advocacy look like.
For individual Reflection: As part of our journey to recognize scientific excellence across the diversity of human genetics and genomics research, will you nominate outstanding individuals for the 2023 ASHG Awards? ASHG is offering a new award nomination mentoring option to help members put together a strong nomination package.
Equity: Finally, as president this year, I am personally passionate to highlight the significant role of health equity in the scientific and clinical aspects of genetics and genomics, and my Presidential Symposium will address these questions at the 2023 Annual Meeting.
For individual Reflection: Will you be there to join that conversation and throughout the days of the annual meeting? Abstract submission will open in April, and we encourage you to make sure your scientific discoveries are part of this dialogue.
Looking Ahead
Although it was important for ASHG to make its statement from a moral standpoint, there is an even more critical reason we needed to apologize. As scientists, the participation of everyone in human genetics research is essential and transformative for human health. As part of our efforts to proactively build a pathway for equity, we will also hope to increase the participation of individuals historically underrepresented or excluded, and those hesitant to participate in human genetics and genomics research.
Yet this can succeed only if it fully incorporates and celebrates diverse human experiences and perspectives, and it must redouble efforts to engage researchers from all backgrounds and earn trust with all communities. We recognize that as a leader, ASHG holds accountability at both the organizational and the broader professional level. Through these efforts, we are striving for a more diverse, equitable and inclusive professional organization and field that meets the needs of all people.
With the Society reflecting on and celebrating its 75th anniversary year, I deeply believe this is a time for new beginnings, even as we continue to confront the past. There is so much to come in the next 25 years in emerging researchers and discoveries, and our continued commitment to fulfill ASHG’s vision that people everywhere realize the benefits of genetics and genomics research. Through a series of celebratory events and activities, ASHG is inviting its members to both recognize all that they have achieved together over the last three quarters of a century and look forward to the opportunities that lie ahead.
These actions and others to come mark milestones in our journey to strengthen the Society and our field. We welcome all human geneticists to join with us in achieving the best possible future for human genetics and genomics and for supporting our nation’s health priorities.