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

Overview

Journal J Health Commun

Specialties Health Services
Public Health

Date 2016 Sep 23

PMID 27653592

Citations 4

Authors

Celeste M Condit

Lijiang Shen

Karen L Edwards

Deborah J Bowen

Diane M Korngiebel

Catherine O Johnson

Affiliations

Soon will be listed here.

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.

Citing Articles

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A scoping review of social and behavioral science research to translate genomic discoveries into population health impact.

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A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.

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