Analysis

Biobank research: who benefits from individual consent?

BMJ 2011; 343 doi: https://doi.org/10.1136/bmj.d5647 (Published 04 October 2011) Cite this as: BMJ 2011;343:d5647
  1. Joanna Stjernschantz Forsberg, PhD student,
  2. Mats G Hansson, professor,
  3. Stefan Eriksson, senior lecturer
  1. 1Centre for Research Ethics and Bioethics, Uppsala University, Box 564, S-751 22 Uppsala, Sweden
  1. Correspondence to: J Stjernschantz Forsberg joanna.forsberg{at}crb.uu.se
  • Accepted 14 August 2011

Requiring informed consent for research on stored tissue samples and associated data safeguards the autonomy rights of donors. But Joanna Stjernschantz Forsberg, Mats Hansson, and Stefan Eriksson argue that this policy not only defeats the interest of society but also runs counter to the interests of the individuals it purports to protect

Much of the research on which our healthcare knowledge is based has not been carried out under circumstances that would be considered morally acceptable today. Scandals such as the experiments of the Nazi doctors,1 the Tuskegee syphilis study,2 and the retention of organs from children in Alder Hey3 have evoked much anger and contempt. In an attempt to protect people from such offences extensive regulations have been put in place.

In many countries, including the United Kingdom and Sweden, requiring informed consent has become the default position not only for invasive research but also for non-interventional research, such as using leftover material taken within the healthcare system.4 Other countries (including Denmark and Belgium) permit presumed consent for such research. In this article we argue that well intended regulations governing biobank research (defined as research on stored tissue samples and associated data) cause harm by hampering medical advances.

Argument for informed consent

Individuals are often claimed to have a right to control how their personal data and samples are used, even if no risks are involved.5 6 From this rights based perspective Alberta law professor Timothy Caulfield has argued that: “While the protection of confidential information is clearly important, respecting autonomy requires much more than simply ensuring that confidentiality is maintained. In the realm of biobanks, autonomy is largely about the maintenance of control over something that implicates personal integrity.”7 Stanford law professor Henry Greely has similarly claimed that individuals have a dignitary interest in …

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