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Ethics and Citizen Participation in the uBiome Institutional Review Board Debate: Some Reflections on Social and Normative Analyses

  • Lorenzo Del Savio
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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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Notes

Acknowledgements

This research was funded by the German Federal Ministry of Education, Research Grant 01GP1311.

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© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Lorenzo Del Savio
    • 1
  1. 1.Christian-Albrechts-Universität zu KielKielGermany

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