Participants' decision to enroll in cohort studies with biobanks: quantitative insights from two German studies. (November 2017)

• Record Type: Journal Article
• Authors: Nobile, Hélène; Borry, Pascal; Pischon, Tobias; Steinbrecher, Astrid; Boeing, Heiner; Vigl, Matthäus; Bergmann, Manuela M
• Is Part Of: Personalized medicine. Volume 14:Number 6(2017)
• Page Start: 485
• Page End: 493
• Publication Date: 2017-11
• Subjects: cohort studies -- Germany -- participation -- questionnaire -- reciprocity; Pharmacogenomics -- Periodicals; Pharmacogenetics -- Periodicals; 615.19
• DOI: 10.2217/pme-2017-0049
• Languages: English
• ISSNs: 1741-0541

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.