Participants’ Decision to Enroll in Cohort Studies with Biobanks: Quantitative Insights from Two German Studies

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.

Keywords::

• cohort studies
• Germany
• participation
• questionnaire
• reciprocity

Acknowledgements

We thank all the participants who generously gave their time to complete the questionnaires. We furthermore acknowledge the support received within each of the study centers for the implementation of this study (the EPIC-Potsdam study center and the study centers Berlin-North and Berlin-South of the GNC), specifically the study doctors (S Mall and W Fleischhauer) and the study nurses (M Stendal and D Nagel). We are also very grateful for the support in the data management provided by E Kohlsdorf.

Financial & competing interests disclosure

This study is part of a doctoral project that was funded by the German Institute for Human Nutrition, Potsdam-Rehbrücke. This study was conducted in the context of the pretest studies of the German National Cohort, which were funded by the participating institutes of the Helmholtz Association and by grants by the Federal Ministry of Education and Research (BMBF) to the participating universities and institutes of the Leibniz Association. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Ethical conduct of research

Within the EPIC-Potsdam, approval was obtained from the Ethics Committee of the State Medical Association of Brandenburg (no. 2110/NE). Within the GNC, approval for the activities included in the pretests was given by the Ethics Committee of the Charité-Universitätsmedizin Berlin (no. EA1/197/12).

Additional information

Funding

This study is part of a doctoral project that was funded by the German Institute for Human Nutrition, Potsdam-Rehbrücke. This study was conducted in the context of the pretest studies of the German National Cohort, which were funded by the participating institutes of the Helmholtz Association and by grants by the Federal Ministry of Education and Research (BMBF) to the participating universities and institutes of the Leibniz Association. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.