Donors Perceptions of Consent to and Feedback from Biobank Research: Time to Acknowledge Diversity?

Abstract

Background: Many studies have explored public perspectives on when and how to provide informed consent to biobank research and when to get feedback on research results. Little has been done to explore overarching trends in these studies. Methods: The article is based on a critical reading of the literature found through Medline searches and the PRIVILEGED project compilation of empirical studies. Results: I suggest that tissue type, procurement situation including who is asked to provide consent, and the biobank’s geographical, social and historical context influence how various potential donors view the issues of consent, re-consent, and feedback of research results. In light of this, universal ethical standards for informed consent to and feedback of research results from biobank research seem to run contrary to the diversity of perceptions and expectations among different donors. Conclusion: To respect donor interests, it is necessary to pay more attention to diversity with regard to biobank types and different contexts for donation. We should avoid assuming that words like ‘biobank’ and ‘donor’ can be used in a generic sense – always referring to the same – if we wish to respect and care for the diverse group of individuals who comprise the donating public.