Understanding participation: The 'citizen science' of genetics

Genetics as Social Practice: Transdisciplinary Views on Science and Culture

Volumn , Issue , 2014, Pages 147-164

  Prainsack, Barbara ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84901171197     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Chapter

References (63)

1. Albanello, L. 2011. Lorenzo's Brain [Online]. Available at: http://lorenzosbrain. blogspot.com [accessed: 1 April 2013].
2. Angrist, M. 2010. Here is a Human Being: At the Dawn of Personal Genomics. New York: Harper Collins Publishers.
3. Anon. 2012. 23andMe CEO Wojcicki on turning 150,000 DNA tests into a research database [Online: Nature Blogs, 26 September]. Available at: http://blogs.nature.com/soapboxscience/2012/09/26/23-and-me-ceo-wojcicki-on-turning-150000-dna-tests-into-a-research-database [accessed: 1 April 2013].
4. Arvidsson, A. 2008. The ethical economy of customer coproduction. Journal of Macromarketing, 28(4): 326-338.
5. Auletta, K. 2009. Googled. The End of the World As We Know It. London: Virgin Books.
6. Bonney, R., Ballard, H., Jordan, R., McCallie, E., Phillips, T., Shirk, J. and Wilderman, C. 2009. Public Participation in Scientific Research: Defining the Field and Assessing its Potential for Informal Science Education [Online: Washington, Centre for the Advancement of Informal Science Education]. Available at: http://caise.insci.org/uploads/docs/PPSR%20report%20FINAL. pdf [accessed: 1 April 2013].
7. Bonsu, S, K. and Darmody, A. 2008. Co-creating second life: Market-Consumer cooperation in contemporary economy. Journal of Macromarketing, 28(4), 355-368.
8. Cohn, J. 2008. Citizen science: Can volunteers do real research? BioScience, 58(3), 192-197.
9. Collins, H. M. and Evans, R. 2002. The third wave of science studies: Studies of expertise and experience. Social Studies of Science, 32(2), 235-296.
10. Collins, H. M. and Evans, R. 2007. Rethinking Expertise. Chicago, IL: University of Chicago Press.
11. Cooke, B. and Kothari, U. (eds). 2001. Participation: The New Tyranny? New York: Zed Books.
12. Cooper, M. and Waldby, C. 2014. Clinical Labour: Human Research Subjects and Tissue Donors in the Global Bioeconomy. Durham, NC: Duke University Press.
13. Cornwell, M. L. and Campbell, L. M. 2012. Co-producing conservation and knowledge: Citizen-based sea turtle monitoring in North Carolina, USA. Social Studies of Science, 42(1), 101-120.
14. Delfanti, A. 2010. Open science, a complex movement. Journal of Science Communication, 9(3), 1-2.
15. Ely, E. 2008. Volunteer monitoring and the democratization of science. Volunteer Monitor, 19(1), 1-5.
16. Epstein, S. 1996. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley, CA: University of California Press.
17. Eriksson, N., Macpherson, J. M., Tung, J. Y., Hon, L. S., Naughton, B., Saxonov, S., Avey, L., Wojcicki, A., Pe'er, I. and Mountain, J. 2010. Web-Based, participant-driven studies yield novel genetic associations for common traits. PLoS Genetics, 6(6), e1000993.
18. Groves, C. and Tutton, R. 2013. Walking the tightrope: Expectations and standards in personal genomics. BioSocieties [Online first: doi: 10.1057/biosoc.2013.1]. Available at: http://www.palgrave-journals.com/biosoc/journal/vaop/ncurrent/ abs/biosoc20131a.html [accessed: 30 April 2013].
19. Hamilton, A. 2008. Innovation of the Year: The Retail DNA Test [Online: Time Magazine]. Available at: http://www.time.com/time/specials/packages/ article/0,28804,1852747_1854493_1854113,00.html [accessed: 1 April 2013].
20. Harding, Sandra. 2008. Sciences from Below: Feminisms, Postcolonialities, and Modernities. Durham, NC: Duke University Press.
21. Harris, A., Wyatt, S. and Kelly, S. 2013. The gift of spit (and the obligation to return it): How consumers of online genetic testing services participate in research. Information Communication and Society, 16(2), 236-257.
22. Iaconesi, S. 2013. La cura - The Cure [Online]. Available at: http://artisopensource. net/cure [accessed: 1 April 2013].
23. Irwin, A. 1995. Citizen Science: A Study of People, Expertise and Sustainable Development. London: Routledge.
24. Khatib, F., DiMaio, F., Foldit. 2011. Crystal structure of a monomeric retroviral protease solved by protein folding game players. Nature Structural & Molecular Biology, 18, 1175-1177.
25. Larson, T. 2013. Power in numbers: The growing citizen science movement. [Online: Yale Scientific, 11 May]. Available at: http://www.yalescientific. org/2013/05/power-in-numbers-the-growing-citizen-science-movement [accessed: 17 May 2013].
26. Lee, Sandra Soo-Jin and Cawley, LaVera. 2009. Research 2.0: Social networking and direct-to-consumer (DTC) genomics. American Journal of Bioethics, 9(6), 35-44.
27. Lippmann, W. 2011 [1927]. The Phantom Public. New Brunswick, NJ: Transaction.
28. Lynch, M. 2008. Know-How. Book review of Rethinking Expertise (Harry Collins and Robert Evans). American Scientist, 96, 337-338.
29. McGonical, J. 2011. Reality is Broken: Why Games Make Us Better and How They Can Change the World. New York: Penguin.
30. McGowan, M. L., Fishman, J. R. and Lambrix, M. A. 2010. Personal genomics and individual identities: Motivations and moral imperatives of early users. New Genetics and Society, 29(3), 261-290.
31. Nielsen, M. 2011. Reinventing Discovery: The New Era of Networked Science, Princeton, NJ: Princeton University Press.
32. Nowotny, H., Scott, P., Gibbons, M. 2001. Re-Thinking Science: Knowledge and the Public in an Age of Uncertainty. Cambridge, UK: Polity Press.
33. Palsson, G. 2008. Genomic anthropology: Coming in from the cold? Current Anthropology, 49(4), 545-568.
34. Palsson, G. (2009). Biosocial relations of production. Comparative Studies in Society and History, 51(2), 288-313
35. Prainsack, B. 2011. Voting with their mice: Personal genome testing and the 'participatory turn' in disease research. Accountability in Research, 18(3), 132-147.
36. Prainsack, B. 2012a. Review of Elias G. Carayannis and David F.J. Campbell, Mode 3 Knowledge Production and Quadruple Helix Innovation Systems: 21st- Century Innovation, and Entrepreneurship for Development (New York, Springer 2012). Minerva, 50(1), 139-142.
37. Prainsack, B. 2012b. Direct-to-consumer theranostics, 21st century collective innovation and entrepreneurship. Interview with Vural Özdemir (McGill University, QC, Canada) and Edward S Dove (Columbia University, NY, USA). Expert Review of Molecular Diagnostics, 12(8), 803-805.
38. Prainsack, B. 2013a. Citizen science in the health domain. In Springer Encyclopedia on Creativity, Invention, Innovation and Entrepreneurship. Available at: http:// urlwww.springerreference.com/docs/html/chapterdbid/358058.html [accessed: 25 April 2013].
39. Prainsack, B. 2013b. 23andMe's 'designer baby' patent: When corporate governance and open science collide. [Online: Genomes Unzipped, 8 October]. Available at: http:// urlwww.genomesunzipped.org/2013/10/guest-post-23andmes-designer-babypatent- when-corporate-governance-and-open-science-collide.php#more-5585 [accessed: 21 October 2013].
40. Prainsack, B., Reardon, J., Hindmarsh, R., Gottweis, H., Naue, U. and Lunshof, J. E. 2008. Misdirected precaution? Nature, 456, 34-35.
41. Prainsack, B. and Vayena, E. 2013. Beyond the clinic: 'Direct-to-consumer' genomic profiling services and pharmacogenomics. Pharmacogenomics, 14(4), 403-412.
42. Reardon, J. 2011. The 'persons' and 'genomics' of personal genomics. Personalized Medicine, 8(1), 95-107.
43. Riesch, H., Potter, C. and Davies, L. 2013. Citizen science as seen by scientists: Methodological, epistemological and ethical dimensions. Public Understanding of Science (in press).
44. Rimmer, M. 2012. 23andMe Inc.: Patent law and lifestyle genetics. Journal of Law, Information and Science, 22(1), 132-164.
45. Rogers, H. 2011. Amateur knowledge: Public art and citizen science. Configurations, 19(1), 101-115.
46. 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. and Bonney, R. 2012. Public participation in scientific research: A framework for deliberate design. Ecology and Society, 17(2): 29. Available at: http://www. ecologyandsociety.org/vol17/iss2/art29 [accessed: 1 April 2013].
47. Shirky, C. 2008. Here Comes Everybody: The Power of Organizing Without Organizations. New York: Penguin.
48. Stelling, A. 2013. How to turn USA science degrees into science careers. PeerJ PrePrints, 1, e3. Available at: http://dx.doi.org/10.7287/peerj.preprints.3 [accessed: 24 April 2013].
49. Sterckx, S., Cockbain, J., Howard, H. C. and Borry, P. (2013). 'I prefer a child with'. Designer babies, another controversial patent in the arena of direct-to-consumer genomics. Genetics in Medicine [online first: doi:10.1038/gim.2013.164].
50. Sunder Rajan, K. 2006. Biocapital: The Constitution of Post-Genomic Life. Durham and London: Duke University Press.
51. Surowiecki, J. 2005. The Wisdom of Crowds. New York: Anchor Books.
52. Swan, M., Hathaway, K., Hogg, C., McCauley, R. and Vollrath, A. 2010, Citizen science genomics as a model for crowdsourced preventive medicine research. Journal of Participatory Medicine, 2: article e20.
53. Tocchetti, S. (2013). How DNA became hackable and biology personal: Tracing the self-fashioning of the DIYbio network. PhD thesis, work in progress. London: London School of Economics and Political Science.
54. Toffler, A. 1983. Previews and Premises. New York: William Morrow.
55. Toffler, A. 1990. Powershift: Knowledge, Wealth, and Violence at the Edge of the 21st Century. New York: Bantam Books.
56. Topol, E. 2012. The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care. New York: Basic Books.
57. Tung, J. Y., Do, C. B., Hinds, D. A., Kiefer, A. K., Macpherson, M., Chowdry, A. B., Franckel, U., Naughton, B. T., Mountain, J. L., Wojcicki, A. and Eriksson, N. 2011. Efficient replication of over 180 genetic associations with self-reported medical data. PLoS ONE, 6(8), e23473.
58. Vayena, E., Gourna, E., Streuli, J., Hafen, E. and Prainsack, B. 2012. Experiences of early users of direct-to-consumer genomic testing in Switzerland; an exploratory study. Public Health Genomics, 15(6), 352-362.
59. Vorhaus, Dan. 2012a. Patenting and Personal Genomics: 23andMe Receives its First Patent, and Plenty of Questions [Online: Genomics Law Report, 1 June]. Available at: http://www.genomicslawreport.com/index.php/2012/06/ 01/patenting-and-personal-genomics-23andme-receives-its-first-patent-andplenty- of-questions [accessed: 1 April 2013].
60. Vorhaus, Dan. 2012b. Implications of Amgen/deCODE Deal for Genetic Testing Consumers [Online: Genomics Law Report, 10 December]. Available at: http://www.genomicslawreport.com/index.php/2012/12/10/implications-ofamgendecode- deal-for-genetic-testing-consumers [accessed: 1 April 2013].
61. Wellcome Trust. 2012. Gamify Your PhD: A new way to communicate cutting-edge research [Online: The Wellcome Trust]. Available at: http://www.wellcome. ac.uk/Funding/Public-engagement/Funded-projects/Major-initiatives/ Broadcast-media-strategy/Gamify-Your-PhD/WTDV033972.htm [accessed: 1 April 2013].
62. Wicks, P., Vaughan, T. E., Massagli, M. P. and Heywood, J. 2011. Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nature Biotechnology, 29, 411-414.
63. Wynne, B. 2003. Seasick on the third wave? Subverting the hegemony of propositionalism. Response to Collins & Evans (2002). Social Studies of Science, 33(3), 401-417.