Broad consent for health care-embedded biobanking: Understanding and reasons to donate in a large patient sample

Gesine Richter, Michael Krawczak, Wolfgang Lieb, Lena Wolff, Stefan Schreiber, Alena Buyx

Research output: Contribution to journalArticlepeer-review

38 Scopus citations

Abstract

PurposeTo facilitate ethically acceptable and practically successful health care-embedded biobanking, the attitudes and understanding of patients and their motivation to participate need to be explored.MethodsA questionnaire study was conducted among 760 outpatients of a northern German university hospital to assess their awareness of, and motivation for giving broad consent to health care-embedded biobanking, also addressing the issue of feedback on individual-level research findings.ResultsThe overall willingness to give broad consent was high (86.9%) in our study, even though the subjective and objective understanding of patients was found to be only modest. Most participants who consented did so for prosocial reasons (altruism, solidarity, reciprocity, gratitude), whereas self-interest or worries about disadvantages played only a marginal role. Better objective understanding was associated with both a greater demand for feedback on individual research findings and a higher willingness to consent. Intermittent modification of the information material provided by the hospital led to significantly improved objective understanding.ConclusionPatient willingness to give broad consent to health care-embedded biobanking is high, with prosocial reasons driving decision making more than factual knowledge and approval or disapproval of specific consent elements. Future efforts to improve the information material used in health care-embedded biobanking should therefore emphasize prosocial reasons to consent.

Original languageEnglish
Pages (from-to)76-82
Number of pages7
JournalGenetics in Medicine
Volume20
Issue number1
DOIs
StatePublished - 1 Jan 2018
Externally publishedYes

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