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Do People Care What’s Done with Their Biobanked Samples?

When donating leftover biological samples to a biobank for use in medical research, people generally are asked to give a broad consent. This allows their samples and associated medical information to be later used without any further consent. Although risks to donors are virtually eliminated by deidentification of their samples, some donors may have concerns about the moral dimensions of research using their biological samples. We used an Internet survey of Michigan residents (N = 683) to determine the effects that information about future possible research uses has on people’s willingness to donate their biological samples under a broad consent. The presentation of research projects that might raise moral concerns for some individuals reduced the number of respondents willing to give a broad consent and reduced confidence in their decision among those still willing to donate. Even so, the great majority (> 85%) remained willing to donate. We discuss the implications of these findings for the consent and information-sharing policies of biobanks.

Tomlinson T, Kaplowitz SA, Faulkner M. Do people care what’s done with their biobanked samples? IRB: Ethics & Human Research 2014;36(4):8-15.