Journal Article

Biobanks—When is Re-consent Necessary?

Kristin Solum Steinsbekk and Berge Solberg

in Public Health Ethics

Volume 4, issue 3, pages 236-250
Published in print November 2011 | ISSN: 1754-9973
Published online November 2011 | e-ISSN: 1754-9981 | DOI: https://dx.doi.org/10.1093/phe/phr031
Biobanks—When is Re-consent Necessary?

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  • Philosophy of Science
  • Philosophy of Biology
  • Bioethics and Medical Ethics
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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 large.

Journal Article.  9132 words. 

Subjects: Philosophy of Science ; Philosophy of Biology ; Bioethics and Medical Ethics ; Medical Ethics ; Public Health

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