Engage Communities, but How? A Guide to Card-Sort Methods for Directing ELSI Research

Abstract: Card sorting is an established but underutilized method to explore attitudes toward conceptual categories. It provides an interactive and outcome-driven technique for community engagement (CE), which can help to strengthen research design. In this interactive workshop, we will demonstrate the card-sorting method we used to engage 3 biobank-affiliated Community Advisory Boards (CABs) in the design of our ELSI study on sociogenomic polygenic scores (PGS). These scores are developed using large datasets from biobanks to examine genetic heritability of social traits, such as risk tolerance and educational attainment. PGS for social traits are controversial. While proponents of PGS see the research as increasing our understanding of gene-environment interactions, some worry that findings could increase stigma and social disparities. These controversies reflect both attempts to move beyond, and to reinvigorate, the nature-nurture debates that contend with core questions about what it means to be human. We used card sorting to elicit CAB members’ attitudes toward PGS for a wide variety of social traits and to prioritize which traits we should focus on for our ELSI study. This workshop will include a hands-on presentation of card-sort methods by providing attendees with a stack of items to group into categories. We will demonstrate the innovation and creativity inherent in card sorting activities and share tips on using the method to elicit the values and priorities of community members, research participants, or patients. In small groups, attendees will practice adapting this method for their own projects and participatory research designs.