ELSIcon2022 Panel: Out of the tower and onto the ground: engaging communities and scientists in emergent research priorities

ELSIcon2022 • Panel • May 27, 2022

Sara Ackerman, Julia Brown, Keolu Fox, Sandra Soo-Jin Lee

ELSI scholars work under varied institutional support structures that make it difficult to operationalize stronger community engagement mechanisms within research agendas. In particular, there is a mismatch between conceptual scholarship being done from the ‘ivory tower’ under the banners of ‘genomic inclusion’ and ‘social justice,’ and the actions being taken to respectfully engage underrepresented communities on the ground. Ideals and assumptions about how to redress historical and often racist paternalistic approaches by consulting with people or groups as equal partners in research can displace the realities of what it will take to create two-way relationships that serve both scientific and community values. The incongruence between the intentions and realities of community engaged research will be critical to resolve as the circle of stakeholders in genomic medicine expands from that of scientists, clinicians and patients to include wider and more representative societal input and oversight. This panel brings together a multidisciplinary panel of experts to discuss what it will really take to make community engagement with underrepresented groups a valuable approach rather than an idealistic concept for emergent research. We will consider: 1) ways in which community engagement is conducive and unconducive to scientific research frameworks and funding interests; 2) how current underrepresentation of minority group scientists impacts community engagement agendas; 3) why ‘community’ membership may be problematic for underrepresented populations who face intersectional barriers rather than social solidarity in their identity; and 4) the need for transparency and disclosure as a complex supplement to individual consent.