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

  • Lorenzo Del Savio


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.


  1. Cooper, M. 2008. Life as Surplus: Biotechnology & Capitalism in the Neoliberal Era. Seattle: University of Washington Press.Google Scholar
  2. 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
  3. Dockser Marcus, A. 2014. The Ethics of Experimenting on Yourself. Wall Street Journal, October 24. Available at: Accessed 24 Aug 2016.
  4. Emanuel, E.J., D. Wendler, and C. Grady. 2000. What Makes Clinical Research Ethical? JAMA 283 (20): 2701–2711.CrossRefGoogle Scholar
  5. European Group on Ethics in Science and New Technologies. 2015. Opinion on the Ethical Implications of New Health Technologies and Citizen Participation. Accessed 24 Aug 2016.
  6. Evans, J.H. 2006. Between Technocracy and Democratic Legitimation: A Proposed Compromise Position for Common Morality Public Bioethics. Journal of Medicine & Philosophy 31 (3): 213–234.CrossRefGoogle Scholar
  7. Graber, M.A., and A. Graber. 2013. Internet-Based Crowdsourcing and Research Ethics: The Case for IRB Review. Journal of Medical Ethics 39 (2): 115–118.CrossRefGoogle Scholar
  8. Hood, L., and S.H. Friend. 2011. Predictive, Personalized, Preventive, Participatory (P4) Cancer Medicine. Nature Review of Clinical Oncology 8 (3): 184–187.CrossRefGoogle Scholar
  9. Madeleine, A., and V. Rabeharisoa. 2012. Lay Expertise in Patient Organizations: An Instrument for Health Democracy. Santé Publique 24 (1): 69–74.CrossRefGoogle Scholar
  10. O’Connor, D. 2013. The Apomediated World: Regulating Research When Social Media Has Changed Research. The Journal of Law and Medical Ethics 41 (2): 470–483.CrossRefGoogle Scholar
  11. Pickersgill, M.D. 2013. From ‘Implications’ to ‘Dimensions’: Science, Medicine and Ethics in Society. Health Care Analysis 21 (1): 31–42.CrossRefGoogle Scholar
  12. Prainsack, B. 2014. The Powers of Participatory Medicine. PLoS Biology 12 (4): e1001837.CrossRefGoogle Scholar
  13. Richman, J. 2013. Could a Citizen Scientist Win a Nobel Prize? Accessed 24 Aug 2016.
  14. Sauermann, H., and C. Franzoni. 2015. Crowd Science User Contribution Patterns and Their Implications. Proceedings of the National Academy of Science USA 112 (3): 679–684.CrossRefGoogle Scholar
  15. Tempini, N., and L. Del Savio. 2018. Digital Orphans: Data Closure and Openness in Patient-Powered Networks. Fortchoming in BioSocieties.Google Scholar
  16. Thorpe, C. 2010. Participation as Post-Fordist Politics: Demos, New Labour and Science Policy. Minerva 48 (4): 389–411.CrossRefGoogle Scholar
  17. Thorpe, C., and J. Gregory. 2010. Producing the Post-Fordist Public: The Political Economy of Public Engagement with Science. Science as Culture 19 (3): 273–301.CrossRefGoogle Scholar
  18. Tutton, R., and B. Prainsack. 2011. Enterprising or Altruistic Selves? Making Up Research Subjects in Genetics Research. Sociology of Health and Illness 33 (7): 1081–1095.CrossRefGoogle Scholar
  19. Vayena, E., and J. Tasioulas. 2013a. Adapting Standards: Ethical Oversight of Participant-Led Health Research. PLoS Medicine 10 (3): e1001402.CrossRefGoogle Scholar
  20. ———. 2013b. The Ethics of Participant-Led Biomedical Research. Nature Biotechnology 31 (9): 786–787.CrossRefGoogle Scholar
  21. Vayena, E., R. Brownsword, S.J. Edwards, B. Greshake, J.P. Kahn, N. Ladher, et al. 2015. Research Led by Participants: A New Social Contract for a New Kind of Research. The Journal of Medical Ethics 42 (4): 216–219.CrossRefGoogle Scholar
  22. 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

Copyright information

© 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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