JMIR Publications

ABSTRACT

Background:

The All of Us Research Program (AoURP) is a prominent precision medicine research initiative committed to diverse participation. The AoURP has increasingly relied on social media to recruit and retain underrepresented populations. Yet, few have analyzed the ethical and social implications of using social media as a mode of participant recruitment and engagement, especially with respect to achieving specific goals of diversity and inclusion. Indeed, the targeted recruitment of underrepresented participants invokes ethical concerns around how participation will manifest tangible benefits for these populations, as well as whether institutions assume responsibility for past and present research harms in order to rebuild trust.

Objective:

This study explores how the AoURP conceptualizes “diversity” in its social media posts, as well as how this implementation aligns with the AoURP’s stated goals. Specifically, this study quantitatively and qualitatively captures (1) which underrepresented populations the program’s social media is appealing to and (2) what messaging is employed in these calls for participation.

Methods:

AoURP social media posts from a six-month period in 2020-2021 were coded based on whether they visually depict or explicitly mention any “underrepresented in biomedical research” (UBR) category officially targeted by the AoURP. These classifications were then used to analyze UBR-specific appeals by performing a thematic analysis.

Results:

Among the ten categories of diversity officially recognized by the AoURP as UBR, 49% of all posts focused on “Race and Ethnicity” and 19% on “Age”; less than 1% invoked any of the other categories. Our thematic analysis identified calls to participate that ranged from benefits to individual participants (receiving genetic results), family and community (uncovering disease predispositions), achieving shared goals (improving the future of health), and resolving injustices (data and health disparities). In further analyzing the last type of appeal, we found that posts were characterized by unclear links between participation and addressing health disparities, incomplete acknowledgment of institutions’ role in data disparities, and the use of empowerment rhetoric that diverts the onus for correcting these disparities onto participants.

Conclusions:

We build upon the rich literature surrounding the concept of “solidarity” to argue that the AoURP’s social media outreach can be largely understood as a solidaristic appeal to participate. In particular, we leverage conceptualizations of solidarity as a shared practice of mutuality and bi-directionality to question the ethicality of the AoURP’s appeals when institutions fail to fully reciprocate this solidarity.