Research Biobanks Meet Synthetic Biology: Autonomy and Ownership
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Abstract
Two examples of research biobanks are discussed. The first is a set of stored blood samples taken from Havasupai Indians by scientists at Arizona State University (ASU). The second is a set of zinc finger proteins (ZFPs) and zinc finger nucleases (ZFNs) assembled by Sangamo BioSciences, Inc. of California. Both examples involve individual and group autonomy, informational asymmetries, and exchange. Both examples are controversial but for different reasons. In the Havasupai case, the Indians claimed that the scientists used the blood samples to analyze a Havasupai predisposition to diabetes, to which they consented, and to extract information about Havasupai inbreeding, schizophrenia, and geographical origins, to which the Indians did not consent. Eventually, ASU returned the blood samples and compensated the tribe and some individual members. Scrutiny shows that the Havasupai complaints were mainly justified. As to ZFPs and ZFNs, some lawyer-scientists contend that Sangamo’s preeminent patent and trade secret position unfairly hinders others from benefiting from Sangamo’s knowledge. Close examination shows no unfairness in the Sangamo case, for two reasons. First, the Zinc Finger Consortium provided an open access alternative to dealing with Sangamo. Second, under standard economic criteria Sangamo did not have a monopoly on zinc finger technology.
Keywords
Zinc Finger Supra Note Synthetic Biology Trade Secret Female Genital CuttingNotes
Acknowledgements
Stephen R. Munzer thanks go to Douglas Fretty, Doug Lichtman, Nory Loeung, Jon Michaels, Hiroshi Motomura, Jennifer Mnookin, Neil Netanel, Frances Olsen, Stephanie Plotin, Angela R. Riley, Seana Shiffrin, and Eric Zolt. I am grateful for the short-term research assistance of Jenifer Morrissey and Matthew Schroeder and especially for the exceptional long-term research assistance of Mark Metzke and Jamie L. Summers.
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