Citizen Science in Health Domain

  • Barbara PrainsackEmail author
Living reference work entry


What Is Citizen Science?

Democratization and Openness

In the last decade, many authors have argued that the separation between roles traditionally associated with knowledge production on the one hand, and roles associated with utilizing and “consuming” knowledge on the other, has become blurry (Goodchild 2007; Nielsen 2011; Fischer et al. 2012; see also Gibbons et al. 1994; Nowotny et al. 2001. For an overview see Riesch 2015). While this is true in many fields of science (Goodchild 2007; Fischer et al. 2012), the health domain is a particularly illustrative example. Patients have started to organize their own medical studies and trials (Wicks et al. 2011); questions that professional scientists have been struggling for years or even decades have been solved by people playing computer games (e.g., Khatib et al. 2011), and patients facing difficult treatment decisions have put their medical information online to invite experts from all over the world to comment...

This is a preview of subscription content, log in to check access.


  1. Albanello L. Lorenzo’s brain. 2011. Accessed 26 Dec 2011.
  2. Angrist M. Here is a human being: at the dawn of personal genomics. New York: Harper Collins Publishers; 2010.Google Scholar
  3. Arvidsson A. The ethical economy of customer coproduction. J Macromark. 2008;28(4):326–38.CrossRefGoogle Scholar
  4. Auletta K. Googled. The end of the world as we know it. London: Virgin Books; 2009.Google Scholar
  5. Björk B-C, Welling P, Laakso M, Majlender P, Hedlund T, Guðnason G, Scalas E. Open access to the scientific journal literature: situation 2009. PLoS ONE. 2010;5(6):e11273.Google Scholar
  6. Bonney R, Cooper CB, Dickinson J, Kelling S, Phillips T, Rosenberg KV, et al. Citizen science: a developing tool for expanding science knowledge and scientific literacy. Bioscience. 2009;59(11):977–84.CrossRefGoogle Scholar
  7. Bonsu SK, Darmody A. Co-creating second life: market–consumer cooperation in contemporary economy. J Macromark. 2008;28(4):355–68.CrossRefGoogle Scholar
  8. Cohn JP. Citizen science: can volunteers do real research? Bioscience. 2008;58(3):192–7.CrossRefGoogle Scholar
  9. Delfanti A. Open science, a complex movement. J Sci Commun. 2010;9(3):1–2.Google Scholar
  10. Del Savio L, Prainsack B, Buyx A. Crowdsourcing the Human Gut. Is crowdsourcing also ‘citizen science’? J Sci Commun. 2016;15:A03.Google Scholar
  11. Fischer DA, Schwamb ME, Schawinski K, Lintott C, Brewer J, Giguere M, et al. Planet hunters: the first two planet candidates identified by the public using the Kepler public archive data. Mon Not R Astron Soc. 2012;419:2900–11.CrossRefGoogle Scholar
  12. Gezelter D. What, exactly, is open science? 2009. Accessed 26 Dec 2011.
  13. Gibbons M, Limoges C, Nowotny H. The new production of knowledge. London: Sage; 1994.Google Scholar
  14. Goodchild MF. Citizens as sensors: the world of volunteered geography. GeoJ. 2007;69(4):211–21.CrossRefGoogle Scholar
  15. Khatib F, DiMaio F, Foldit Contenders Group, et al. Crystal structure of a monomeric retroviral protease solved by protein folding game players. Nat Struct Mol Biol. 2011;18:1175–7.CrossRefGoogle Scholar
  16. Nielsen M. Reinventing discovery: the new era of networked science. Princeton: Princeton University Press; 2011.CrossRefGoogle Scholar
  17. Nowotny H, Scott P, Gibbons M. Re-thinking science: knowledge and the public in an age of uncertainty. Cambridge: Polity Press; 2001.Google Scholar
  18. Prainsack B. Understanding participation: the ‘citizen science’ of genetics. In: Prainsack B, Werner-Felmayer G, Schicktanz S, editors. Genetics as social practice: transdisciplinary views on science and culture. Farnham: Ashgate; 2014. p. 147–64.Google Scholar
  19. Prainsack B, Riesch H. Interdisciplinarity reloaded? Drawing lessons from ‘citizen science’. In: Frickel S, Albert M, Prainsack B, editors. Investigating interdisciplinary collaboration: theory and practice across disciplines. New Brunswick: Rutgers University Press; 2016. p. 194–212.Google Scholar
  20. Riesch H. Citizen science. In: Wright JD, editor. International encyclopedia of the social & behavioral sciences. 2nd ed. Oxford: Elsevier; 2015. p. 631–6.CrossRefGoogle Scholar
  21. Robinson L, Halle D. Digitization, the Internet, and the arts: eBay, Napster, SAG, and e-books. Qual Sociol. 2002;25(3):359–83.CrossRefGoogle Scholar
  22. Shirky C. Here comes everybody: the power of organizing without organizations. New York: Penguin; 2008.Google Scholar
  23. Surowiecki J. The wisdom of crowds. New York: Anchor Books; 2005.Google Scholar
  24. Swan M, Hathaway K, Hogg C, McCauley R, Vollrath A. Citizen science genomics as a model for crowdsourced preventive medicine research. J Particip Med. 2010;2:e20.Google Scholar
  25. Toffler A. Previews and premises. New York: William Morrow; 1983.Google Scholar
  26. von Hippel E. Democratizing innovation. Cambridge, MA: MIT Press; 2005.Google Scholar
  27. Wicks P, Vaughan TE, Massagli MP, Heywood J. Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nat Biotechnol. 2011;29:411–4.CrossRefGoogle Scholar
  28. Wiggins GN, Stevenson RD, Crowston K. Mechanisms for data quality and validation in citizen science. IEEE seventh international conference on escience workshops, Stockholm. (2011). Accessed 17 Feb 2012.
  29. Ziman J. ‘Postacademic science’: constructing knowledge with networks and norms. Sci Stud. 1996;9:67–80.Google Scholar

Copyright information

© Springer Science+Business Media LLC 2017

Authors and Affiliations

  1. 1.Department of Political ScienceUniversity of ViennaViennaAustria
  2. 2.Department of Global Health and Social MedicineKings College LondonLondonUK

Section editors and affiliations

  • David F. J. Campbell
    • 1
  1. 1.Faculty for Interdisciplinary StudiesAlpen-Adria-University KlagenfurtViennaAustria