Upset the set up: Moving from community engagement to community empowerment

Abstract

The Black feminist creative bell hooks wrote that “to build community requires vigilant awareness of the work we must continually do to undermine all the socialization that leads us to behave in ways that perpetuate domination.” Community engagement is often presented as a way to build a ‘genomic inclusive’ research community that promotes social justice in the field of human genetics. However, genetic research has largely retained, and perpetuated, historical societal structures of domination. It has done so through racist, ableist, and classist campaigns that promote data collection as the end point for community engagement, while ignoring both communities' immediate needs and the necessity of restructuring systems that preclude long term equitable implementation and sharing of benefits. Despite increasing calls for community engagement, incentives structures within the research enterprise make such work difficult. Ideals and assumptions about how to redress historical and often racist and paternalistic approaches by consulting with people or groups as equal partners in research can displace the realities of what it will take to create multi-faceted relationships that serve both scientific and community values. In response to these challenges and the promises of community engagement, the overarching objectives of this session are to: (1) examine ongoing efforts that break the mold of transactional community engaged research; and (2) explore remaining needs for community empowered research in genetics and genomics. It does so by bringing together diverse stakeholders in the field to consider the need to transition from community engagement to community empowerment. This session celebrates the voices of those who have been most harmed by scientific research by presenting solutions from Black, Indigenous, Disabled, and LGBTQIA+ communities. Importantly, this session moves beyond a discussion of whether and how dominant approaches to communicate engagement perpetuate inequality and the limited agency of underserved communities in human genetics to explore, along a number of dimensions, the social and ethical implications of such approaches. Alongside audience members, speakers will engage in a productive dialogue on how to sustainably empower and include communities who have been historically excluded and harmed by the antecedents of research in human genetics with the intention to upset the set up.