Biobanks, the ‘diagnostic misconception’ and the distinction between altruism and reciprocity

Abstract In this paper, we revisit the topic of genetic biobanks and the ethical issues surrounding them. Focusing on the centrality of altruism to their conception, design and governance, we explore the ways in which the idea of participation as a “free gift” has served to define and constrain the terms of discussion around the ethics of biobanks. Discussing empirical evidence of widespread expectations for personal health information, often framed as a “diagnostic misconception”, we highlight the ways in which the concept is frequently employed to protect a particular moral economy of research in which participants’ expectations around the return of personal health information are reduced to a lack of informed consent. Conversely, we suggest that reciprocity provides a more accurate empirical account of participation in biobanks, although this is not merely a form of transactional exchange that flips the script of biobank participation from altruism to self-interest. We conclude that without a reconsideration of the entire conceptual edifice of biobanking, calls to create more reciprocal and solidarity-based models are likely to do little to change the status quo, and that a deeper and more anthropologically informed consideration of reciprocity would serve to improve frameworks for addressing the ethical issues that biobanks entail.