Participants’ decision to enroll in cohort studies with biobanks: quantitative insights from two German studies-Reference-Cited by-同舟云学术

Participants’ decision to enroll in cohort studies with biobanks: quantitative insights from two German studies

Published:2017-11 Issue:6 Volume:14 Page:477-485
ISSN:1741-0541
Container-title:Personalized Medicine
language:en
Short-container-title:Personalized Medicine

Author:

Nobile Hélène¹²,Borry Pascal²,Pischon Tobias³,Steinbrecher Astrid³,Boeing Heiner¹,Vigl Matthäus¹,Bergmann Manuela M¹

Affiliation:

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.

Publisher

Future Medicine Ltd

Subject

Pharmacology,Molecular Medicine,General Medicine

Link

https://www.futuremedicine.com/doi/pdf/10.2217/pme-2017-0049

Reference41 articles.

1. A comprehensive evidence-based approach is needed for promoting participation in health research: A commentary on Williams

2. Altruism and participation in longitudinal health research? Insights from the Whitehall II Study

3. Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study

4. Biobank Recruitment: Motivations for Nonparticipation

5. Communication of biobanks' research results: What do (potential) participants want?

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