Author:

Keywords:

Science & Technology, Life Sciences & Biomedicine, Pharmacology & Pharmacy, cohort studies, Germany, participation, questionnaire, reciprocity, GENETIC RESEARCH, NATIONAL COHORT, HEALTH RESEARCH, EPIC-GERMANY, RECIPROCITY, RETURN, INFORMATION, ALTRUISM, Adult, Aged, Altruism, Biological Specimen Banks, Cohort Studies, Decision Making, Female, Humans, Male, Middle Aged, Motivation, Precision Medicine, Research Subjects, Surveys and Questionnaires, 3202 Clinical sciences, 3214 Pharmacology and pharmaceutical sciences

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.