Biobanks--When is Re-consent Necessary?
Public Health Ethics 4 (3):236-250 (2011)
Abstract
The unknown nature of tomorrow’s research makes informed consent in biobank research a challenge. Whether the consent given by biobank participants is ‘broad’ or ‘narrow’, the ever present question remains the same: are new activities covered by the original consent? In this article, we focus on the meaning of, and the relation between, broad consent and re-consent in biobank research. We argue that broad consent should be understood as consenting to a framework—a framework which covers aims, core conditions for acceptable use, governance and how these affect participants. Changes that alter the framework in a fundamental way call for re-consent. Three biobank cases of current international interest are used to debate when re-consent is an ethical necessity: whole-genome sequencing, data sharing and commercial utilization. These reflections give us a more nuanced view on what consent is for. We claim that the introduction of broad consents in biobank research has not represented a betrayal of individual participant interests, as some critics have asserted. Broad consents combined with the possible use of re-consent are in certain settings not inferior, but rather ethically superior to narrow consents. In population-based research biobanks, they allow for a reconciliation between individual interest and public matters in society at largeDOI
10.1093/phe/phr031
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Citations of this work
The biobank consent debate: Why ‘meta-consent’ is not the solution?Neil C. Manson - 2019 - Journal of Medical Ethics 45 (5):291-294.
Informed consent and routinisation.Thomas Ploug & Soren Holm - 2013 - Journal of Medical Ethics 39 (4):214-218.
Eliciting meta consent for future secondary research use of health data using a smartphone application - a proof of concept study in the Danish population.Thomas Ploug & Søren Holm - 2017 - BMC Medical Ethics 18 (1):51.
Consent to epistemic interventions: a contribution to the debate on the right (not) to know.Niels Nijsingh - 2016 - Medicine, Health Care and Philosophy 19 (1):103-110.
«If you give them your little finger, they’ll tear off your entire arm»: losing trust in biobank research.Lars Ursin, Borgunn Ytterhus, Erik Christensen & John-Arne Skolbekken - 2020 - Medicine, Health Care and Philosophy 23 (4):565-576.
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Broadening consent--and diluting ethics?B. Hofmann - 2009 - Journal of Medical Ethics 35 (2):125-129.
Why Communities and Their Goods Matter: Illustrated with the Example of Biobanks.H. Widdows & S. Cordell - 2011 - Public Health Ethics 4 (1):14-25.