Participants’ Role Expectations in Genetics Research and Re-consent: Revising the Theory and Methods of Mental Models Research Relating to Roles

Abstract

The rise of large cohort-based health research that includes genetic components has increased the communication challenges for researchers. Controversies have been amplified over requirements for re-consent, return of results, and privacy protections, among other issues. This study extended research on the impact that the perceived role of “research participant” might have on communication expectations to illuminate research participants’ preferences for re-consent. The study employed an online survey of participants in a long-standing cancer genetics registry. Results confirmed previous exploratory findings that research participants endorse multiple mental models of participant roles in research (doctor–patient, collaborator, donor, legal contract, etc.). Regression analyses indicated that high and low salience of different models of the role of research participant are related to different communication expectations. However, the pattern of relationships among roles is relevant. The results of the regression analysis also indicated that preference for mandatory re-consent and its relationship to mental models of roles are related to attitudes of trust, benefits, and informational risks. The discussion identifies implications as including the use of explicit approaches to address role relationships in communication with research participants. It also points to implications for methodological approaches in mental model research.

Acknowledgments

The authors acknowledge and thank Lesley Pfeifer, Anne Renz, Joan Scott, and David Kaufmann for their work contributing to the earlier stages of this project. They thank Jennifer Samp for her advice on the literature on role theory in communication studies.

Funding

This research was supported by NIH grant# R01CA149051 to Karen Edwards (PI), “Identification of Issues and Expectations of Subjects Participating in Genetic Studies of Cancer.”

Additional information

Funding

This research was supported by NIH grant# R01CA149051 to Karen Edwards (PI), “Identification of Issues and Expectations of Subjects Participating in Genetic Studies of Cancer.”