Abstract
uBiome offers a gut bacteria sequencing service to consumers to entice data donation. It aims to establish a genomic repository for microbiomics. In 2013, some bloggers worried that uBiome operations had not received any Institutional Review Board (IRB) ethics approval. uBiome co-founders Richman and Apte replied by effectively arguing that crony research agencies hamper innovation by requiring cumbersome for-fee IRBs to so-called “citizen science” projects. The debate soon ascended from ethics to appropriate institutional design for research and innovation. I reconstruct the ethical issues underpinning the uBiome-IRB debate and situate them in the emerging context of entrepreneurial science relying on crowdsourcing. This paper contributes to the dialogue between social scientists and bioethicists promoted in this volume by offering an analysis of a case study that requires attention to the organizational and economic context and lends itself to collaboration across disciplines.
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The process has been completed as the website now (September 2015) states as follows: “An Institutional Review Board (IRB) is a committee that approves, oversees and reviews biomedical and behavioral research involving humans. They determine whether or not research should be done, and they advocate for the individual participant (like you!) uBiome has received research study approval from E&I Review Services.”
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Acknowledgements
This research was funded by the German Federal Ministry of Education, Research Grant 01GP1311.
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Del Savio, L. (2018). Ethics and Citizen Participation in the uBiome Institutional Review Board Debate: Some Reflections on Social and Normative Analyses. In: Riesch, H., Emmerich, N., Wainwright, S. (eds) Philosophies and Sociologies of Bioethics. Springer, Cham. https://doi.org/10.1007/978-3-319-92738-1_4
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