IRB: Ethics & Human Research

What Should Be the Character of the Researcher-Participant Relationship? Views of Participants in a Long-standing Cancer Genetic Registry

by Celeste M. Condit, Diane M. Korngiebel, Lesley Pfeifer, Anne D. Renz, Deborah J. Bowen, David Kaufman, Laura Min Mercer Kollar, and Karen L. EdwardsPublished Volume: 37 | Issue: 4

Medical researchers, institutional review boards, research ethicists, and other scholars have variously portrayed the relationship between researchers and participants as akin to donor, doctor-patient, commercial, legal, community-individual, or collaborative relationships. Each model carries different ethical entailments, because humans tend to use models of the relationships with which they are familiar to guide their behaviors and expectations. The nature of the relationship one imagines as existing between researcher and participant therefore has consequences for specific research obligations such as consent processes, privacy protections, scope of data sharing, and familial involvement. In this report, we present content analytic and thematic analyses of interviews with experienced research participants in a cancer genetics registry to enhance understanding of the relational models research participants draw on in constructing their expectations for the research relationship. The participants in the registry, located in the northwestern United States, gave their views on researcher-participant relationships via 31 telephone interviews. Content analytic and thematic analyses indicate that the majority expressed a preference for a relatively distanced and formal relationship. They endorsed components of relationships akin to gift-giving, collaboration, doctor-patient interactions, and legal contracts. The majority did not affirm models based in teacher-student, community-individual, or personal relationships. In this article, we describe the complex components of the models that participants identified as relevant to their views, and we explore implications of these findings.

Condit CM, Korngiebel DM, Pfeifer L, et al. What should be the character of the researcher-participant relationship? Views of participants in a long-standing cancer genetic registry. IRB: Ethics & Human Research 2015;37(4):1-10.