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

Per Med. 2017 Nov;14(6):477-485. doi: 10.2217/pme-2017-0049. Epub 2017 Nov 24.

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: Germany; cohort studies; participation; questionnaire; reciprocity.

Publication types

  • Multicenter Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Altruism
  • Biological Specimen Banks*
  • Cohort Studies
  • Decision Making*
  • Female
  • Germany
  • Humans
  • Male
  • Middle Aged
  • Motivation
  • Precision Medicine / psychology
  • Research Subjects / psychology*
  • Surveys and Questionnaires