Ethics and Citizen Participation in the uBiome Institutional Review Board Debate: Some Reflections on Social and Normative Analyses
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.
This research was funded by the German Federal Ministry of Education, Research Grant 01GP1311.
- Cooper, M. 2008. Life as Surplus: Biotechnology & Capitalism in the Neoliberal Era. Seattle: University of Washington Press.Google Scholar
- Del Savio, L., A. Buyx, and B. Prainsack. 2016. Crowdsourcing the Human Gut: Is Crowdsourcing Also Citizen Science? Journal of Science Communication 15 (03): A03.Google Scholar
- Dockser Marcus, A. 2014. The Ethics of Experimenting on Yourself. Wall Street Journal, October 24. Available at: http://www.wsj.com/articles/the-ethics-of-experimenting-on-yourself-1414170041. Accessed 24 Aug 2016.
- European Group on Ethics in Science and New Technologies. 2015. Opinion on the Ethical Implications of New Health Technologies and Citizen Participation. https://ec.europa.eu/research/ege/pdf/opinion-29_ege_executive-summary-recommendations.pdf. Accessed 24 Aug 2016.
- Physioprof. 2013. uBiome Has Made A Public Statement About IRB Compliance of Their Human Subjects Research. http://freethoughtblogs.com/physioprof/2013/02/21/ubiome-has-made-a-public-statement-about-irb-compliance-of-their-human-subjects-research/#ixzz3bzA69iGl. Accessed 24 Aug 2016. Read more: http://freethoughtblogs.com/physioprof/2013/02/21/ubiome-has-made-a-public-statement-about-irb-compliance-of-their-human-subjects-research/#ixzz4IGTruOHD.
- Richman, J. 2013. Could a Citizen Scientist Win a Nobel Prize? http://www.tedmed.com/speakers/show?id=54370. Accessed 24 Aug 2016.
- Tempini, N., and L. Del Savio. 2018. Digital Orphans: Data Closure and Openness in Patient-Powered Networks. Fortchoming in BioSocieties.Google Scholar
- Wynne, B.E. 2006. Public Engagement as Means of Restoring Trust in Science? Hitting the Notes, but Missing the Music. Community Genetics 9 (3): 211–220.Google Scholar