Biobanks--When is Re-consent Necessary?

Public Health Ethics 4 (3):236-250 (2011)
  Copy   BIBTEX

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 large

Other Versions

No versions found

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 103,667

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Broadening consent--and diluting ethics?B. Hofmann - 2009 - Journal of Medical Ethics 35 (2):125-129.

Analytics

Added to PP
2011-11-04

Downloads
78 (#282,944)

6 months
11 (#294,068)

Historical graph of downloads
How can I increase my downloads?

References found in this work

Rethinking Research Ethics.Rosamond Rhodes - 2010 - American Journal of Bioethics 10 (10):19-36.
Rethinking research ethics.Rosamond Rhodes - 2005 - American Journal of Bioethics 5 (1):7 – 28.
Broadening consent--and diluting ethics?B. Hofmann - 2009 - Journal of Medical Ethics 35 (2):125-129.

View all 22 references / Add more references