title: 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.
authors.affiliation: a Department of Communication Studies , University of Georgia , Athens , Georgia , USA.
authors.forename: Celeste M
authors.initials: CM
authors.lastname: Condit
authors.affiliation: b Department of Communication Arts and Sciences , Pennsylvania State University , University Park , Pennsylvania , USA.
authors.forename: Lijiang
authors.initials: L
authors.lastname: Shen
authors.affiliation: c Department of Epidemiology, School of Medicine , University of California, Irvine , Irvine , California , USA.
authors.forename: Karen L
authors.initials: KL
authors.lastname: Edwards
authors.affiliation: d Department of Bioethics and Humanities , University of Washington , Seattle , Washington , USA.
authors.forename: Deborah J
authors.initials: DJ
authors.lastname: Bowen
authors.affiliation: e Biomedical Informatics and Medical Education , University of Washington , Seattle , Washington , USA.
authors.forename: Diane M
authors.initials: DM
authors.lastname: Korngiebel
authors.affiliation: c Department of Epidemiology, School of Medicine , University of California, Irvine , Irvine , California , USA.
authors.forename: Catherine O
authors.initials: CO
authors.lastname: Johnson
mesh_terms: D000368:Aged; D015331:Cohort Studies; D003142:Communication; D005260:Female; D036281:Genetic Research; D006801:Humans; D007258:Informed Consent; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D009369:Neoplasms / Q000235:genetics; D011582:Psychological Theory; D012042:Registries; D035842:Research Subjects / Q000523:psychology* / Q000706:statistics & numerical data; D035844:Researcher-Subject Relations / Q000523:psychology; D012380:Role; D011795:Surveys and Questionnaires