Abstract
In the last two decades, biobanks have become critical components in researchers’ efforts to cure, treat or prevent cancer, diabetes and many other diseases. At the same time, the amassing of specimens has been brought into question by recognition that the lack of standardization across highly diverse collections presents an impediment for future biomedical research. By looking at standardization as a practice of accountability in biobanking, this article examines the relationship between standardization and ethics in the work of six biobanks in the United States. Standards, we argue, are necessary to biobanking, yet there is also an unquestioned faith put into the standardization of biobank practice and products. This, we argue, reveals that beyond their immediate function, standards do other work. Using interview data, we show how standardization can serve as a performance of accountability, which, as we explain using the concept of audit cultures, constitutes biobanks as an ethical subject. We conclude by pointing out that while efforts to standardize are important for making best use of samples and data, when calling for standardization, we should be mindful of the other (ethical) work that standardization does and contemplate its particular consequences.
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Acknowledgements
Funding for this project was provided through the following grants: 1R01HG005227 01A1 (Henderson, G., PI, “From Specimen to Biobank: Using An Organizational Perspective To Study ELSI Issues”) from the NHGRI, and 5UL1RR025747-04S1, a supplement to U54RR024382-01A1 (Runge, M., PI, “Enhancing Biobank Capacities Across CTSAs”). Support was also provided by the UNC Center for Genomics and Society, P50 HG004488 from the NHGRI. The content of this article does not necessarily reflect the views or policies of the funding agencies.
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Lassiter, D., Jean Cadigan, R., Haldeman, K. et al. Standardization as performative accountability in biobanking. BioSocieties 11, 67–81 (2016). https://doi.org/10.1057/biosoc.2015.20
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DOI: https://doi.org/10.1057/biosoc.2015.20