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.
Tomlinson T, De Vries R, Kim SYH. Ethical Standards for Research Biobank Donation—Reply. JAMA. 2015;313(15):1574. doi:10.1001/jama.2015.2751