Written by Albert Hinman, PhD, 2022-2023 Genetics & Public Policy Fellow
At the ASHG 2022 Annual Meeting, members of the ASHG Professional Practice and Social Implications Committee (PPSI) followed up on the recently published Guidance on addressing underrepresentation in genetics and genomics research through community engagement. Organized by ASHG and PPSI members Kyle Brothers, MD, PhD, Amy Lemke, PhD, MS, and Maya Sabatello, LLB, PhD, the session entitled, “How to Get Started Engaging Underrepresented Communities in Genetics & Genomics Research” focused on the recommendations from the Guidance to give actionable information for early career researchers and professionals on how they can make impactful introductions for meaningful community engagement.
To realize ASHG’s vision of people everywhere being able to realize the benefits of human genetics and genomics, researchers need to better understand how they can address health inequities and increase the representation of underserved populations in research. Although it will take many diverse approaches to realize this vision, one of the most promising ways to address it is for researchers to incorporate community engagement into the research lifecycle. The Guidance, written by PPSI committee members and other subject matter experts, detailed how researchers can engage with communities throughout their projects. Although it is powerful as a standalone resource, the authors wanted to increase adoption of the recommendations and present their approach through a session and panel event at the ASHG 2022 Annual Meeting. The ASHG 2022 event included a professionally diverse array of participants, including graduate students, postdoctoral scholars, junior faculty, and project supervisors.
Presenters Emphasized the Importance of Making Introductions and Engaging in Cultural Humility Early in the Research Process
On Making Connections for Community Engaged Research
Recommendations from the Panel Event on the Preparatory to Research Phase
- Learn about the community and culture
- Identify partners and liaisons familiar to the community
- Discuss research question(s), design and process
- Work with partners to address preliminary issues
Participants and Panelists Discussed the Importance of Incorporating Community Representatives, Thinking Beyond Traditional Communities, and Building Genuine Trust
Moderator Maya Sabatello, PhD, LLB, next facilitated conversations among the attendees to discuss what communities they wanted to engage with, what resources would be needed, and identify potential challenges of engaging with those groups. As the tables reported the results of their discussions, there were concurrent themes of ensuring researchers understand community needs and sensitivities, building authentic relationships with the community, and incorporating a broad diversity of representation within studies. Finally, in the panel discussion, PPSI member Rosario Isasi, JD, MPH, emphasized the need for researchers to understand the faults of genetic determinism with how uncovered genetic information may adversely affect assumptions about racial or cultural identity. Panelist Joseph Yracheta, MS, further discussed the importance of recognizing admixture in different communities and identifying genuine representatives of the community collective.
This session was a starting point for early career researchers to become better equipped with knowledge from this Guidance on making introductions with underserved communities and understanding the challenges and opportunities of community engagement practices. In this spirit, survey data collected during the session revealed that over 70% of the attendees reported that they are “Likely” or “Very Likely” to incorporate community-engaged research into their future projects. Furnished with this knowledge, participants are now more informed and able to critically examine their research and identify opportunities to advance meaningful and lasting engagement with underrepresented communities. ASHG remains committed to educating members and the broader research community on responsible research practices, and is planning additional opportunities to share the recommendations and approaches from this Guidance.