Participant Engagement in Translational Genomics Research: Respect for Persons—and Then Some

Ethics & Human Research
Volume 41, Issue 5 September–October 2019
https://onlinelibrary.wiley.com/toc/25782363/current

 

Engagement, Indirect Benefits, and Randomization
Articles
Participant Engagement in Translational Genomics Research: Respect for Persons—and Then Some
Janet E. Childerhose, Candice R. Finnila, Joon‐Ho Yu, Barbara A. Koenig, Jean McEwen, Stacey L. Berg, Benjamin S. Wilfond, Paul S. Appelbaum, Kyle B. Brothers
Pages: 2-15
First Published: 20 September 2019
ABSTRACT
The expansion of both formal and informal frameworks of “engaged” research in translational research settings raises emerging and substantial normative concerns. In this article, we draw on findings from a focus group study with members of a national consortium of translational genomic research sites. The goals were to catalog informal participant engagement practices, to explore the perceived roots of these practices and the motivations of research staff members for adopting them, and to reflect on their ethical implications. We learned that participant engagement is a deliberate strategy by research staff members both to achieve instrumental research goals and to “do research differently” in response to past research injustices. While many of the participant engagement practices used in translational genomic research are not new, important insights can be gained through a closer examination of the specific contours of participant engagement in this context. These practices appear to have been shaped by the professional training of genetic counselors and by the interests and needs of participants who enroll in clinical genomics studies. The contours of this contemporary application of engaged research principles have relevance not only to clinical genomics research but also to translational research broadly, particularly for how communities of clinical researchers are interpreting the principle of respect for persons. Our findings invite normative questions about the governance of these practices and sociological questions about whether and how clinical researchers in other professions are also engaging participants in translational research settings.