Protection of Non-Welfare Interests in the Research Uses of Archived Biological Samples

Discussion of the ethical challenges raised by the growth of research biobanks relies on the assumption that the only ethically relevant interests concern risks to subjects’ welfare or well-being. But in fact people may have a variety of “non-welfare” interests that remain relevant even when materials are de-identified. After describing these non-welfare interests, Dr. Tomlinson explores three related questions. First, what evidence is there that people have non-welfare interests in research uses of biological materials, or that these interests affect their willingness to contribute to biobanks? Second, what’s the moral weight of such interests? If we have a duty to accommodate them, is it for pragmatic, or for principled reasons? And third, if we should accommodate non-welfare interests, how should we do so? Dr. Tomlinson uses the example of complicity in research to explore the second and third questions in some depth.
Tom Tomlinson, PhD
Director in the Center for Ethics and Humanities in the Life Sciences and Department of Philosophy at MSU
Recorded September 22, 2010