“Small Data”: How community engagement will disrupt the current human subjects research ethics paradigm

November 5, 2018 -
2:00pm to 4:00pm

Abstract: Community and stakeholder engagement (CSE) in public health and biomedical research have complex ethical roots in social theory about power, marginalization, the ethical significance of participatory action, and social and political solidarity, among others. As such, CSE has an almost perfectly orthogonal relationship to the dominant global research ethics paradigm that has been shaped disproportionately by the US Common Rule regulations and their successful promulgation throughout the world. The dominant paradigm conceptualizes research participants as “radically particularized” entities, singularly concerned with the protection of their autonomy, with virtually no explicit recognition of the ethical significance of the relationships and social networks and communities in which they are embedded. Because the dominant paradigm offers no meaningful guidance to funders or implementation partners or investigators or IRBs about how interests beyond those of individual research participants ought to be reflected in the design and execution of research programs, CSE has been treated largely as a set of considerations peripheral to the central goals of securing voluntary participation and a favorable risk-benefit profile for individual participants.

In this presentation, Dr. Lavery will argue that CSE provides a means to assess how the conduct and/or outcomes of any given research program are likely to affect the interests of a wide range of stakeholders, i.e., individuals and organizations, beyond individual research participants. CSE strategies create a “human infrastructure” of stakeholders for any given research program. And the interactions and relationships that are established between the research program and these stakeholders provides the contexts necessary to elicit insights about the potential implications for stakeholders’ interests. These “small data” insights have unique evidentiary value in that they can help to identify, and offer opportunities to mitigate, potential set-backs to stakeholders’ interests (i.e., harms) through program design and course correction. And as its evidence base evolves, CSE is likely to disrupt the narrow and individualistic conventions of the Common Rule paradigm and reshape the research ethics of the future.

Visiting Professor in Ethics and Public Health Lecture

Location and Address

A115 Public Health