Hélène Nobile1,2, Pascal Borry2, Tobias Pischon3, Astrid Steinbrecher3, Heiner Boeing1, Matthäus Vigl1, Manuela M Bergmann1. 1. Department of Epidemiology, German Institute for Human Nutrition Potsdam-Rehbrücke, Nuthetal, Germany. 2. Center for Biomedical Ethics & Law, Department of Public Health & Primary Care, KU Leuven, Leuven, Belgium. 3. Molecular Epidemiology Research Group, Max-Delbrück-Center for Molecular Medicine in the Helmholtz Association (MDC), Berlin, Germany.
Abstract
AIM: To understand participants' actual motivations to enroll in cohort studies with biobanks. METHODS: Participants of two such studies currently ongoing in Germany were invited to fill in a questionnaire about their decision to enroll. RESULTS: From the 623 questionnaires completed, contributing to scientific knowledge appeared as a main motive for enrollment, followed by learning about personal health status and receiving personal medical advice. CONCLUSION: Motivating participation as a way to contribute to the common good rather than as a way to obtain personal benefits appears to be particularly appropriate to ensure participants' long-term commitment and should therefore be further investigated in this setting.
AIM: To understand participants' actual motivations to enroll in cohort studies with biobanks. METHODS:Participants of two such studies currently ongoing in Germany were invited to fill in a questionnaire about their decision to enroll. RESULTS: From the 623 questionnaires completed, contributing to scientific knowledge appeared as a main motive for enrollment, followed by learning about personal health status and receiving personal medical advice. CONCLUSION: Motivating participation as a way to contribute to the common good rather than as a way to obtain personal benefits appears to be particularly appropriate to ensure participants' long-term commitment and should therefore be further investigated in this setting.