Participants’ Accounts on Their Decision to Join a Cohort Study With an Attached Biobank

Abstract

Reliable participation and sustained retention rates are crucial in longitudinal studies involving human subjects and biomaterials. Understanding the decision to enroll is an essential step to develop adequate strategies promoting long-term participation. Semi-structured interviews were implemented with newly recruited and long-term participants randomly drawn from two ongoing longitudinal studies with a biobank component in Germany. Iterative qualitative content analysis was applied to the transcribed interviews. Participants (n = 31) expressed their decision to enroll or remain in the study as the result of the complex interplay of individual factors, institutional cues, study-related features, and societal dynamics. Different forms of trust were identified as central within the elements used to explain participation and could be compared to Dibben, Morris, and Lean's dynamic model of interpersonal trust. Given these high levels of trust, an investigation of the morality of the trustful relationship at stake between participants and research(ers) is warranted.

Enrolling Genomics Research Participants through a Clinical Setting: the Impact of Existing Clinical Relationships on Informed Consent and Expectations for Return of Research Results

“…The role of the institution identified in this study did not seem to extend beyond judgements of credibility. Similar expressions of the impact of trust in an institution's reputation contributing to enrollment in research have been recently reported (Nobile et al 2016). While a sense of obligation to enroll in research based on the institution as reported by Hoyer (2003) was not identified in our study, our attention is drawn to the fact that participants here did express that a positive reputation of the institution led to them asking fewer questions before enrollment than they may have in a different situation.…”

“…While a sense of obligation to enroll in research based on the institution as reported by Hoyer (2003) was not identified in our study, our attention is drawn to the fact that participants here did express that a positive reputation of the institution led to them asking fewer questions before enrollment than they may have in a different situation. Nobile et al (2016) found that institutional trustworthiness seemed to also encompass the researchers themselves; however, this possible lumping or differentiation of trust between provider/researcher and institution is difficult to determine in our study because all enrolling providers had both an existing clinical relationship with participants and were affiliated with the same institution as the research study.…”

“…Indeed, trust is an important and valued construct in a client-centered relationship for genetic counseling practice, as has been reported by both experienced genetic counselors and their patients (Miranda et al 2016;Skirton 2001). Nobile et al (2016) suggest that a first step in managing the impact of this trust on a research relationship is to acknowledge it, which should be proceeded by a second step to examine the morality of the trust in specific situations by ensuring it is deserved and checking for potential abuse. Therefore, awareness of this trust does warrant consideration by clinician-researchers with efforts to minimize any coercive influence and either meet participant expectations or set realistic expectations for research involvement.…”

Amnestic MCI Patients’ Perspectives on Volunteer Participation in a Research Context

“…The prevailing literature on motivations to participate in research studies concerns other research fields, such as genetics-related studies [3,4]. One focus group study by Lawrence et al explored patient and carer views specifically on this topic [5].…”

“…It has been a challenge to prevent and slow down disease progression in AD because of the limited efficacy of current treatment options. Researchers need to explore what motivates individuals to enroll in a clinical trial and what participants perceive as trial benefits and risks, and then leverage these vis-à-vis participation to stimulate and achieve reliable research subject participation [3].…”