title: Participants' Accounts on Their Decision to Join a Cohort Study With an Attached Biobank: A Qualitative Content Analysis Study Within Two German Studies.
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.
authors.affiliation: German Institute of Human Nutrition Potsdam-Rehbrücke, Nuthetal, Germany Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Belgium helene.nobile@dife.de.
authors.forename: Hélène
authors.initials: H
authors.lastname: Nobile
authors.affiliation: German Institute of Human Nutrition Potsdam-Rehbrücke, Nuthetal, Germany.
authors.forename: Manuela M
authors.initials: MM
authors.lastname: Bergmann
authors.affiliation: German Institute of Human Nutrition Potsdam-Rehbrücke, Nuthetal, Germany.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Moldenhauer
authors.affiliation: Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Belgium.
authors.forename: Pascal
authors.initials: P
authors.lastname: Borry
mesh_terms: D000328:Adult; D001290:Attitude; D018070:Biological Specimen Banks; D035843:Biomedical Research / Q000941:ethics; D015331:Cohort Studies; D003657:Decision Making; D005260:Female; D005858:Germany; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009014:Morals; D036301:Qualitative Research; D035842:Research Subjects; D035502:Trust; D055815:Young Adult
keywords: Germany; biobank; cohort study; decision; participation; qualitative interviews; trust