Zusammenfassung
Patients and healthy citizens are taking part in biomedical research in unprecedented numbers and ways. While the lion’s share of participation occurs in a ‘traditional’ manner where individuals volunteer to be researched, people without professional training are also increasingly contributing to scientific knowledge production as so-called citizen scientists. In many projects, lay participants share decision-making power with professional researchers, jointly setting the research agenda, planing the study, acquiring funding, and selecting the methodology. In some instances projects are led exclusively by ‘lay’ people who carry out data collection and analyses, and disseminate the results. Despite their diversity, all of these practices are often subsumed under the label of ‘citizen science’. While enthusiasm for citizen science is growing, substantive ethical and political analyses of this phenomenon are still scarce. Differentiating among citizen science initiatives according to the main type of task that citizen scientists are expected to contribute, we provide a taxonomy to distinguish between different strands of participatory practices. As citizen science of medicine continues to develop, we predict that self-policing practices of stakeholders are likely to play an increasingly important role. We close by discussing emerging ethical considerations around these initiatives.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Preview
Unable to display preview. Download preview PDF.
Similar content being viewed by others
Literatur
Allison, M. (2009). Can Web 2.0 Reboot Clinical Trials? Nature Biotechnology 27(10), 895–902.
Angrist, M. (2010). Here is a Human Being: At the Dawn of Personal Genomics. New York: Harper Collins Publishers.
Basset, H., Stuart, D., & Silber, D. (2012). From Science 2.0 to Pharma 3.0. Witney, UK: Chandos Publishing.
Beer, D., & Burrows, R. (2010). Consumption, prosumption and participatory web cultures: an introduction. Journal of Consumer Culture 10(1), 3–12.
Bonney, R., Ballard, H., Jordan, R., McCallie, E., Phillips, T., Shirk, J., & Wilderman, C. C. (2009). Public participation in scientific research: defining the field and assessing its potential for informal science education. http://www.birds.cornell.edu/citscitoolkit/publications/CAISE-PPSR-report-2009.pdf/view. Zugegriffen: 20. Februar 2018.
Brossard, D., Lewenstein, B., & Bonney, R. (2005). Scientific knowledge and attitude change: The impact of a citizen science project. International Journal of Science Education 27(9), 1099–1121.
Buyx, A., Del Savio, L., Prainsack, B., & Völzke, H. (2017). Every participant is a PI. Citizen science and participatory governance in population studies. International Journal of Epidemiology 46(2), 377-384.
Clifford, D. C. (2005). A People’s History of Science. New York: Nation Books.
Cohn, J. P. (2008). Citizen Science: Can Volunteers Do Real Research? BioScience 58(3), 192-197.
Collier, E., & Danis, M. (2017). Participation of Citizen Scientists in Clinical Research and Access to Research Ethics Consultation. The American Journal of Bioethics 17(4), 70–72.
Cooper, M., & Waldby, C. (2008). Clinical Labour: Human Research Subjects and Tissue Donors in the Global Bioeconomy. Durham, NC: Duke University Press.
Crisp, N. (2012). Patient power needs to be built on strong intellectual foundations. The British Medical Journal 345, e6177.
DeFrancesco, L. (2015). To Share is Human. Nature Biotechnology 33, 796–800.
Delfanti, A. (2010a). Users and peers. From citizen science to P2P science. Journal of Science Communication 9(1), 1-5.
Delfanti, A. (2010b). Open science, a complex movement. Journal of Science Communication 9(3), 1-2.
Delfanti, A. (2013). Biohackers. The Politics of Open Science. London: Pluto Press.
Del Savio, L., Prainsack, B., & Buyx, A. (2016). Crowdsourcing the Human Gut. Is crowdsourcing also citizen science? Journal of Scientific Computing 15(03), A03.
Del Savio, L., Prainsack, B., & Buyx, A. (2017). Motivations of participants in the citizen science of microbiomics: data from the British Gut Project. Genetics in Medicine 19(8), 959-961.
Eitzel, M. V., Cappadonna, J. L., Santos-Lang, C., Duerr, R. E., Virapongse, A., West, S. E., & Kyba, C. C. M. (2017). Citizen Science Terminology Matters: Exploring Key Terms. Citizen Science: Theory and Practice 2(1).
Emanuel, E. J., Wendler, D. & Grady, C. (2000). What makes clinical research ethical? Journal of the American Medical Association 283, 2701-11.
Epstein, S. (1996). Impure science: AIDS, activism, and the politics of knowledge. Berkeley, CA: University of California Press.
Eriksson, N. J., Macpherson, J. M., Tung, J. Y., Hon, L. S., Naughton, B., Saxonov, S., Avey, L., Wojcicki, A., Pe’er, I., & Mountain, J. (2010). Web-Based, Participant-Driven Studies Yield Novel Genetic Associations for Common Traits. Public Library of Science: Genetics 6(6), e1000993.
European Commission – Socientize Consortium. (2014). White Paper on Citizen Science for Europe. http://www.socientize.eu/?q=eu/content/download-socientize-white-paper. Zugegriffen: 15. Februar 2015.
Eysenbach, G. (2005). The law of attrition. Journal of Medical Internet Research 7, e11.
Eysenbach, G. (2008). Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness. Journal of Medical Internet Research 10(3), e22.
Fox, R. C. C., & Swazey, J. P. (2008). Observing Bioethics. Oxford, New York: Oxford University Press.
Haklay, M. (2015). Citizen Science and Policy: a European Perspective. Washington DC: The Woodrow Wilson Centre. http://www.scribd.com/collections/3840667/Commons-Lab-Science-and-Technology-Innovation-Program-STIP. Zugegriffen: 15. Februar 2015.
Haraway, D. (1997). Modest_Witness@Second_Millennium.FemaleMan_Meets_OncoMouse: Feminism and Technoscience. London: Routledge.
Hood, L. & Friend, S. H. (2011). Predictive, personalized, preventive, participatory (P4) cancer medicine. Nature Reviews Clinical Oncology 8, 184-7.
Irwin, A. (1995). Citizen Science: A study of people, expertise and sustainable development. London: Routledge.
Janssens, A. C. & Kraft, P. (2012). Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations. Public Library of Science: Medicine 9, e1001328.
Juengst, E. T., Flatt, M. A. & Settersten, R. A. (2012). Personalized Genomic Medicine and the Rhetoric of Empowerment. The Hastings Center Report 42(5), 34–40.
Kallinikos, J., & Tempini, N. (2014). Patient Data as Medical Facts: Social Media Practices as a Foundation for Medical Knowledge Creation. Information Systems Research 25(4), 817-33.
Kaye, J., Curren, L., Anderson, N., Edwards, K., Fullerton, S. M., Kanellopoulou, N., Lund, D., MacArthur, D. G., Mascalzoni, D., Shepherd, J., Taylor, P. L., Terry, S. F., & Winter, S. F. (2011). From patients to partners: participant-centric initiatives in biomedical research. Nature Review of Genetics 13(5), 371-6.
Kelly, S. E., Spector, T. D., Cherkas, L. F., Prainsack, B., & Harris, J. M. (2015). Evaluating the Consent Preferences of UK Research Volunteers for Genetic and Clinical Studies. Public Library of Science: Medicine. https://doi.org/10.1371/journal.pone.0118027.
Kelty, C. & Panofsky, A. (2014). Disentangling Public Participation in Science and Biomedicine. Genome Medicine.
Kelty, C., Panofsky, A., Currie, M., Crooks, R. E., Seth Garcia, P., Wartenbe, M., & Wood, S. (2014). Seven dimensions of contemporary participation disentangled. Journal of the Association for Information Science and Technology 66, 32330-1643.
Khatib, F., DiMaio, F., Foldit Contenders Group, Foldit Void Crushers Group, Cooper, S., Kazmierczyk, M., Gilski, M., Krzywda, S., Zabranska, H., Pichova, I., Thompson, J., Popović, Z., Jaskloski, M., & Baker, D. (2011). Crystal structure of a monomeric retroviral protease solved by protein folding game players. Nature Structural & Molecular Biology 18, 1175-1177.
Kimura, A., & Kinchy, A. (2016). Citizen Science: Probing the Virtues and Contexts of Participatory Research. Engaging Science, Technology, and Society 2, 331-61.
Lengwiler, M. (2008). Participatory Approaches in Science and Technology: Historical Origins and Current Practices in Critical Perspective. Science, Technology, & Human Values 33(2), 186–200.
Lupton, D. (2014). The commodification of patient opinion: the digital patient experience economy in the age of big data. Sociology of Health & Illness 36(6), 856-869.
Lupton, D. (2015). Digital Sociology. Oxon, UK: Routledge.
Nielsen, M. (2011). Reinventing Discovery: The New Era of Networked Science. Princeton, NJ: Princeton University Press.
O’Connor, D. (2013). The apomediated world: regulating research when social media has changed research. The Journal of Law, Medicine and Ethics 41(2), 470-83.
Özdemir, V., Badr, K. F., Dove, E. S., Endrenyi, L., Geraci, C. J., Hotez, P. J., & Milius, D. (2013). Crowd-funded micro-grants for genomics and ‘big data’: An Actionable Idea Connecting Small (Artisan) Science, Infastructure Science, and Citizen Philanthrophy. OMICS: A Journal of Integrative Biology 17(4), 161-72.
Parsons, K. (2003). The Science Wars: Debating Scientific Knowledge and Technology, Amherst, NY: Prometheus Books.
Parsons, J., Lukyanenko, R., & Wiersma, Y. (2011). Easier Citizen Science is Better. Nature 471, 37.
Prainsack, B. (2014a). Understanding participation: the ‘citizen science’ of genetics. In B. Prainsack, S. Schicktanz & G. Werner-Felmayer, Genetics As Social Practice. (S. 147-164). Farnham: Ashgate.
Prainsack, B. (2014b). The powers of participatory medicine. Public Library of Science: Biology 12(4), e1001837.
Prainsack, B. (2017). Personalized Medicine: Empowered Patients in the 21st Century? New York City: New York University Press.
Prainsack, B., & Buyx, A. (2013). A solidarity-based approach to the governance of research biobanks. Medical Law Review 21(1), 71-91.
Prainsack, B., Reardon, J. B., Hindmarsh, R., Gottweis, H., Naue, U., & Lunshof, J. E. (2008). Personal Genomes. Misdirected Precaution. Nature 456(7218), 34-5.
Rabeharisoa, V. & Callon, M. (2002). The involvement of patients’ associations in research. International Social Science Journal.
Rabeharisoa, V., Moreira, T., & Akrich, M. (2013). Evidence-based activism: Patients’ organisations, users’ and activist’s groups in knowledge society. Paris: CSI Working Papers Series.
Rank, J. (2012). Connected health. How Mobile Phones, Cloud, and Big Data will Reinvent Health Care. San Francisco, CA: GigaOM Books.
Rasmussen, L. M. (2016). “Filling the ‘Ethics Gap’ in Citizen Science Research”: A Workshop Report. https://www.niehs.nih.gov/research/supported/translational/peph/webinars/ethics/rasmussen_508.pdf. Zugegriffen: 20. Februar 2018.
Reardon, J. (2011). The ‘persons’ and ‘genomics’ of personal genomics. Personalized Medicine 8(1), 95-107.
Richter, G., Krawczak, M., Lieb, W., Wolff, L., Schreiber, S., & Buyx, A. (2017). Broad consent for healthcare-embedded biobanking: understanding and reasons to donate in a large patient sample. Genetics in Medicine 20(1), 76-82.
Riesch, H., Potter, C., & Davies, L. (2013). Combining citizen science and public engagement: The Open Air Laboratories Programme. Journal of Science Communication 12(3).
Riesch, H. & Potter, C. (2014). Citizen Science as Seen by Scientists: Methodological, Epistemological and Ethical Dimensions. Public Understanding of Science 23(1), 107-20.
Robert, G., Cornwell, J., Locock, L., Purushotham, A., Sturmey, G., Gager, M. (2015). Patients and staff as codesigners of healthcare services. The British Medical Journal 350, g7714.
Sauermann, H. & Franzoni, H. (2015). Crowd science user contribution patterns and their implications. Proceedings of the National Academy of Science USA 112 (3), 679-84.
Schmitt, D. (2013). Crowdfunding science: could it work? The Guardian. http://www.theguardian.com/higher-education-network/blog/2013/nov/11/science-research-funding-crowdfunding-excellence. Zugegriffen: 23. Juli 2015.
Shapin, S., & Schaffer, S. (1989). Leviathan and the Air-Pump: Hobbes, Boyle, and the Experimental Life. Princeton: Princeton University Press.
Shirk, J. L., Ballard, H. L., Wilderman, C. C., Philips, T., Wiggins, A., Jordan, R., McCallie, E., Minarchek, M., Lewenstein, B. V., Krasny, M. E., & Bonney, R. (2012). Public participation in scientific research: a framework for deliberate design. Ecology and Society 17(2), 29.
Shirky, C. (2010). Cognitive Surplus: Creativity and Generosity in a Connected Age. London: Allen Lane.
Shneiderman, B. (2008). Science 2.0. Science 319(5868), 1349-50.
Surowiecki, J. (2005). The Wisdom of Crowds. New York: Anchor Books.
Swan, M., Hathaway, K., Hogg, C., McCauley, R., & Vollrath, A. (2010). Citizen Science Genomics as a Model for Crowdsourced Preventive Medicine Research. Journal of Participatory Medicine 2, e20.
Tempini, N. (2014). Governing social media: organising information production and sociality through open, distributed and data-based systems. http://etheses.lse.ac.uk/1026/. Zugegriffen: 20. Februar 2018.
Tempini, N. (2015). Governing Patients Like Me: information production and research through an open, distributed and data-based social media network. The Information Society 31(2), 193-211.
Tempini, N., & Del Savio, L. (2018) Get the balance right: data closure and openess in patient-powered networks. Biosocieties. Forthcoming.
Tocchetti, S. (2012). DIY biologists as ‘makers’ of personal biologies. How make magazine and maker faires contribute in constituting biology as a personal biology technology. Journal of Peer Production 2. http://peerproduction.net/issues/issue-2/peer-reviewed-papers/diybiologists-as-makers/. Zugegriffen: 15. Februar 2015.
Tocchetti, S. (2015). How did DNA become hackable and biology personal? Tracing the self-fashioning of the DIYBio network. http://etheses.lse.ac.uk/3098/1/Tocchetti_How_did_DNA_become_hackable_and_biology_personal.pdf. Zugegriffen: 20. Februar 2018.
Toffler, A. (1980). The third wave: The classic study of tomorrow. New York, NY: Bantam.
Topol, E. (2012). The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care. New York: Basic Books.
Topol, E. (2015). The Patient Will See You Now: The Future of Medicine is in Your Hands. New York: Basic Books.
Vayena, E., Mastroianni A., & Kahn, J. (2012). Ethical Issues in Health Research with Novel Online Sources. American Journal of Public Health 102(12), 2225-30.
Vayena E., & Tasioulas, J. (2013a). The ethics of participant-led biomedical research. Nature Biotechnology 31, 786–787.
Vayena, E., & Tasioulas, J. (2013b). Adapting Standards: Ethical Oversight of Participant-Led Health Research. Public Library of Science: Medicine 10(3), e1001402.
von Hippel, E. (2005). Democratizing Innovation: The Evolving Phenomenon of User Innovation. Cambridge, MA: The MIT Press.
Weber, G. M., Mandl, K. D., & Kohane, I. S. (2014). Finding the missing link for big biomedical data. Journal of the American Medical Association 311(24), 2479-2480.
Wicks, P., Vaughan, T. E., Massagli, M. P., & Heywood, J. (2011). Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nature Biotechnology 29, 411-414.
Wiggins, A., & Crowston, K. (2015). Surveying the citizen science landscape. First Monday 20(1).
Woolley, J. P., McGowan M. L., Teare, H. J. A., Coathup, V., Fishman, J. R., Settersten, R. A., Sterckx, S., Kaye, J., & Juengst, E. T. (2016). Citizen science or scientific citizenship? Dientangling the uses of public engagement rhetoric in national research initiatives. BMC Medical Ethics 17:33.
WMA – World Medical Association (1964). Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects. June 1964.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2019 Springer Fachmedien Wiesbaden GmbH, ein Teil von Springer Nature
About this chapter
Cite this chapter
Fiske, A., Del Savio, L., Prainsack, B., Buyx, A. (2019). Conceptual and Ethical Considerations for Citizen Science in Biomedicine. In: Heyen, N., Dickel, S., Brüninghaus, A. (eds) Personal Health Science. Öffentliche Wissenschaft und gesellschaftlicher Wandel. Springer VS, Wiesbaden. https://doi.org/10.1007/978-3-658-16428-7_10
Download citation
DOI: https://doi.org/10.1007/978-3-658-16428-7_10
Published:
Publisher Name: Springer VS, Wiesbaden
Print ISBN: 978-3-658-16427-0
Online ISBN: 978-3-658-16428-7
eBook Packages: Social Science and Law (German Language)