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Comment & Response |

Ethical Standards for Research Biobank Donation—Reply

Tom Tomlinson, PhD1; Raymond De Vries, PhD2; Scott Y. H. Kim, MD, PhD3
[+] Author Affiliations
1Center for Ethics and Humanities in the Life Sciences, Michigan State University, East Lansing
2Center for Bioethics and Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor
3Department of Bioethics, National Institutes of Health, Bethesda, Maryland
JAMA. 2015;313(15):1574. doi:10.1001/jama.2015.2751.
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In Reply We agree with Mr Dove and Dr Prainsack that an individual’s decision to donate samples and medical information to a biobank is influenced by many factors, including those they describe. That makes it no less true, however, that a decision to donate may also be affected by a large range of moral concerns over future research possibilities, represented only in part by the scenarios presented in our survey.

As Dove and Prainstock suggest, that range of possibilities is essentially unlimited and unpredictable, all the more so with the increase of data sharing on an international scale. Individuals who donate to future biobank research during their participation in a clinical trial evaluating new treatments for their medical condition, for example, cannot expect that such research will be confined to that subject. That is why it is common practice in the United States to get a separate consent for the biobank donation that usually gives explicit permission to use it and its associated data in any future research for which it is suitable. Thus, whatever their starting points, most donations of specimens and associated medical information will produce data likely to end up in a research biobank.

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April 21, 2015
Edward S. Dove, BA, BCL, LLB; Barbara Prainsack, DPhil
1J Kenyon Mason Institute for Medicine, Life Science and the Law, University of Edinburgh School of Law, Edinburgh, Scotland
2Department of Social Science, Health and Medicine, King’s College, London, England
JAMA. 2015;313(15):1573-1574. doi:10.1001/jama.2015.2748.
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