The American Society of Human Genetics (ASHG) today published a new Guidance on community engagement as a strategy to address underrepresentation in genomics research. Appearing in today’s issue of the American Journal of Human Genetics (AJHG), this new resource was developed by the Society’s Community Engagement Guidance Writing Group, comprised of members of the ASHG Professional Practice and Social Implications Committee (PPSI) and others with subject expertise. It was approved by the ASHG Board of Directors for publication in April 2022.
The vision of ASHG is that people everywhere will realize the benefits of human genetics and genomics (https://new.ashg.org/about/mission-strategic-plan/). Ensuring that the benefits of human genetics and genomics research are realized in ways that minimize harms and maximize benefits is a goal that can only be achieved through focused efforts to address health inequities and increase representation in research. Community engagement uniquely offers researchers in human genetics and genomics an opportunity to pursue that vision successfully, including by addressing underrepresentation in genomics research.
“Community engagement is a critical step in ensuring that genetics and genomics research is able to address health disparities and underrepresentation,” said ASHG PPSI Committee Co-Chair Kyle Brothers, MD, PhD. “In the past, genetics and genomics researchers have rarely been trained to do community-engaged research. However, there is a critical opportunity for genetics and genomics researchers to become more familiar with these approaches, perhaps even starting to train graduate students and post-doctoral trainees in these methods.” Amy Lemke, PhD, MS, Community Engagement Guidance Writing Group Co-Chair and the corresponding author on this Guidance, added, “The value of community-engaged research is increasingly recognized as an integral component of genomics research in underrepresented populations, from pre-study implementation to post-study reporting. Community-engaged research offers an opportunity for bi-directional learning in the conduct and reporting of genomics research.”
The Guidance draws from extensive formative research and direct experience in community-engaged research to provide genetics and genomics researchers with a starting point for building meaningful, trustworthy, and long-term working relationships with communities who are historically marginalized and underrepresented in genetics and genomics research. Contemporary genomics research requires highly collaborative partnerships between scientists, clinical and translational researchers, and patient advocates, among many others; investigators should also invite and empower communities to become partners in the research process. Guidance to researchers includes fundamental approaches that will help facilitate respectful engagement and ultimately more successful research efforts.
Recognizing that researchers do not always have formal training on specific ethical or social implications, ASHG sees the creation of each Guidance as a tangible and constructive step in responsible application. In pursuit of this education goal, there will be a session at the Society’s annual meeting, ASHG 2022, on how to get started engaging underrepresented communities in genetics and genomics research. The goal of this session is to give researchers actionable information and guidance, focusing on some of the recommendations prior to conducting the research. Early-stage researchers and trainees are encouraged to participate. Registration is required and spaces are filling quickly. The committee is also looking for additional opportunities to engage the research community with this content, including a webinar in early 2023.