Paper short abstract:

We draw on a body of original community engagement research to explore the phenomenon of being an “unwitting donor” to a legacy collection biobank. We explore how this collective reacted to learning of their involvement and policy implications in light of high profile biobanking controversies.

Paper long abstract:

How do individuals respond to the potentially unsettling news that they (or their children) are part of a state managed research biobank? Does the term 'donor' apply in the relevant sense of the word to individuals who had no involvement in the decision to contribute their biospecimen to a biobank? This presentation will use empirical findings from several community engagement efforts aimed at a large and diffuse public consisting of unwitting (unconsented) donors to a state-run biobank comprised of residual newborn screening bloodspots spanning 26 years in the state of Michigan, USA. We will explore some of the most common cognitive and affective reactions that 'donors' expressed upon learning of their 'involvement' in this biobank and how these responses are aligned and misaligned with what the biobank itself anticipated both in its policies and practices. The existence of legacy collections such as this point to the creation of a new type of donor class, "unwitting donors" who, although empowered to opt-out, must first become aware that they are involved. State-wide surveys indicate that after six years of operation, the public remains largely ignorant of its existence or their involvement wit this biobank. How do members of this collective of "unwitting donors" view the biobank and their subject-position vis-à-vis the state institutions that govern it? The presentation will close with a reflection on the voices of the citizens we engaged in light of high profile biobank controversies and ongoing policy debates regarding the ethics and governance of biobanks in the US.