Wrestling with Public Input on an Ethical Analysis of Scientific Research

Abstract

Bioethicists frequently call for empirical researchers to engage participants and community members in their research, but don't themselves typically engage community members in their normative research. In this article, we describe an effort to include members of the public in normative discussions about the risks, potential benefits, and ethical responsibilities of social and behavioral genomics (SBG) research. We reflect on what might—and might not— be gained from engaging the public in normative scholarship and on lessons learned about public perspectives on the risks and potential benefits of SBG research and the responsible conduct and communication of such research. We also provide procedural lessons for others in bioethics who are interested in engaging members of the public in their research.

Placing Publics in Public Health Genomics

“…Interrogate Who Is Considered an "Expert" Terms like "public engagement" and "community engagement" have become buzzword as researchers and academics increasingly recognize the value of collaboration with a wide variety of communities [24]. However, scholars have shown that there is uncertainty about what it means to engage publics or a community and what the goals of such engagements should be [33,34]. Considering the perspectives, values, and epistemologies of publics (i.e., viewing publics as experts in their lived experiences) is often seen as non-essential to the scientific process, treated as an afterthought, or acted upon because funders require it [31].…”

“…Opinions about who decides which research and implementation outcomes to evaluate and which methods should be used for doing so can vary among different groups [25]. Furthermore, publics may identify, define, and prioritize benefits and harms differently than researchers [34]. Thus, research and any resulting research applications (e.g., the introduction of PGS into preventive health screenings) that are intended to support public health will need to be implemented in partnership with publics.…”