Illness Online: Self-reported Data and Questions of Trust in Medical and Social Research

Theory, Culture & Society

Volumn 30, Issue 4, 2013, Pages 131-150

  Wyatt, Sally ^a   Harris, Anna ^b   Adams, Samantha ^c   Kelly, Susan e ^d  

^a ROYAL NETHERLANDS ACADEMY OF ARTS AND SCIENCES   (Netherlands)

^b MAASTRICHT UNIVERSITY   (Netherlands)

^c ERASMUS UNIVERSITY ROTTERDAM   (Netherlands)

^d UNIVERSITY OF EXETER   (United Kingdom)

Author keywords

data; digital; genetics; methodology; technology

Indexed keywords

EID: 84879520239     PISSN: 02632764     EISSN: 14603616     Source Type: Journal    
DOI: 10.1177/0263276413485900     Document Type: Article

References (64)

1. Abbate J. (1999) Inventing the Internet, Cambridge, MA: The MIT Press.
2. Adams, S. (2010) ‘Sourcing the Crowd for Health Experiences: Letting the People Speak or Obliging Voice through Choice?’, pp. 178–193 in R. Harris, N. Wathen and S. Wyatt (eds) Configuring Health Consumers: Health Work and the Imperative of Personal Responsibility. Basingstoke: Palgrave Macmillan.
3. Agar J. (2006) What Difference Did Computers Make to Science? Social Studies of Science 36: 869–907.
4. Akrich, M. (2010) ‘From Communities of Practice to Epistemic Communities: Health Mobilizations on the Internet’, Sociological Research Online 15(2): 10. URL: http://www.socresonline.org.uk/15/2/10.html.
5. Allison M. (2009) Can Web 2.0 Reboot Clinical Trials? Nature Biotechnology 27(10): 895–902.
6. Arnquist, S. (2009) ‘Research Trove: Patients’ Online Data’, The New York Times, 24 August.
7. Bakardjieva, M. and Feenberg, A. (2000) ‘Involving the Virtual Subject’, Ethics and Information Technology 2: 233–240.
8. Beaulieu, A. and Estalella, A. (2011) ‘Rethinking Research Ethics for Mediated Settings’, Information, Communication & Society 15(1): 23–42.
9. Bishop L. (2009) Ethical Sharing and Reuse of Qualitative Data. Australian Journal of Social Issues 44(3): 255–272.
10. Bowker, G.C. and Star, S.L. (1999) Sorting Things Out: Classification and its Consequences. Cambridge, MA: The MIT Press.
11. Boyd D., Crawford K. (2012) Critical Questions for Big Data: Provocations for a Cultural, Technological, and Scholarly Phenomenon. Information, Communication & Society 15(5): 662–679.
12. Brown N. (2003) Hope Against Hype: Accountability in Biopasts, Presents and Futures. Science Studies 16(2): 3–21.
13. Bruyninckx, J. (2013) Sound Science: Recording and Listening in the Biology of Bird Song, 1880–1980, PhD dissertation, Maastricht University.
14. Callon, M. and Rabeharisoa, V. (2003) ‘Research “in the Wild” and the Shaping of New Social Identities’, Technology in Society 25(2): 193–204.
15. Callon, M. and Rabeharisoa, V. (2008) ‘The Growing Engagement of Emergent Concerned Groups in Political and Economic Life’, Science, Technology & Human Values 33(2): 230–261.
16. Carusi A. (2008) Data as Representation: Beyond Anonymity in e-Research Ethics. International Journal of Internet Research Ethics 1(1): 37–65.
17. Collins, H.M. and Evans, R. (2002) ‘The Third Wave of Science Studies’, Social Studies of Science 32(2): 235–296.
18. Do, C.B., Tung, J.Y., Dorfman, E., Kiefer, A.K., Drabant, E.M., Francke, U., Mountain, J.L., Goldman, S.M., Tanner, C.M., Langston, J.W., Wojcicki, A. and Eriksson, N. (2011) ‘Web-based Genome-wide Association Study Identifies Two Novel Loci and a Substantial Genetic Component for Parkinson's Disease’, PLoS Genetics 7(6): e1002141.
19. Epstein, S. (2008) ‘Patient Groups and Health Movements’, pp. 499–539 in E.J. Hackett, O. Amsterdamska, M. Lynch and J. Wajcman (eds) The Handbook of Science and Technology Studies. Cambridge, MA: The MIT Press.
20. Eriksson, N., Macpherson, J.M., Tung, J.Y., Hon, S.L., 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): 1–20.
21. Ess C.(2009) Digital Media Ethics, Cambridge: Polity Press.
22. Ess, C. and AoIR Ethics Working Committee (2002) ‘Ethical Decision-Making and Internet Research: Recommendations from the AoIR Ethics Working Committee’. URL:http://aoir.org/reports/ethics.pdf.
23. Fearnley, L. (2006) ‘Beyond the Public's Health: Constructing National Syndromic Surveillance’. Working paper, Anthropology of the Contemporary Research Collaboratory.
24. Foster, V. and Young, A. (2012) ‘The Use of Routinely Collected Patient Data for Research: A Critical Review’, Health 16(4): 448–463.
25. Foucault, M. (1963) Naissance de la Clinique: Une Archéologie du Regard Medical. Paris: Presses Universitaires de France (The Birth of the Clinic: An Archaeology of Medical Perception, trans. A. Sheridan. London: Routledge, 2003).
26. Genes, N. (2006) ‘Diabetes Patient Offers Goldmine of Information and Support’, Medscape Med Students 8(2). URL: http://www.medscape.com/viewarticle/544166.
27. Gibson, G. and Copenhaver, G. (2010) ‘Consent and Internet-Enabled Human Genomics’, PLoS Genetics 6(6): e1000965.
28. Ginsberg, J., Mohebbi, M.H., Patel, R.S., Brammer, L., Smolinski, M.S. and Brilliant, L. (2009) ‘Detecting Influenza Epidemics Using Search Engine Query Data’, Nature 457(19): 1012–1014.
29. Goetz, T. (2010) ‘Sergey Brin's Search for a Parkinson's Cure’, WIRED Magazine, 22 June.
30. Gordon, N., Hiatt, R. and Lampert, D. (1993) ‘Concordance of Self-reported Data and Medical Record Audit for Six Cancer Screening Procedures’, Journal of the National Cancer Institute 85(7): 566–570.
31. Hall, W., Mathews, R. and Morley, K. (2009) ‘Being More Realistic about the Public Health Impact of Genomic Medicine’, PLoS Medicine 7(10): e1000347.
32. 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 & Society 16(2): 236–257.
33. Jutel A. (2010) Sociology of Diagnosis: A Preliminary Review. Sociology of Health & Illness 31(2): 278–299.
34. Kotz, J. (2012) ‘Bringing Patient Data into the Open’, Science Business Exchange 5(25): doi: 10.1038/scibx.2012.644.
35. Langstrup H. (2011) Interpellating Patients as Users: Patient Associations and the Project-ness of Stem Cell Research. Science, Technology & Human Values 36(4): 573–594.
36. Lawrence A. (2006) “No Personal Motive?”: Volunteers, Biodiversity, and the False Dichotomies of Participation. Ethics, Place & Environment 9(3): 279–298.
37. Levallois, C., Steinmetz, S. and Wouters, P. (2013) ‘Sloppy Data Floods or Precise Social Science Methodologies?’, pp. 151–182 in P. Wouters, A. Beaulieu, A. Scharnhorst and S. Wyatt (eds) Virtual Knowledge: Experimenting in the Humanities and the Social Sciences. Cambridge, MA: The MIT Press.
38. Lipworth, W., Forsyth, R. and Kerridge, I. (2011) ‘Tissue Donation to Biobanks: A Review of Sociological Studies’, Sociology of Health & Illness 33(5): 792–811.
39. Lupton, D. (2012) ‘The Quantified Self Movement: Some Sociological Perspectives’, This Sociological Life. URL (consulted November 2012): http://simplysociology.wordpress.com/2012/11/04/the-quantitative-self-movement-some-sociological-perspectives.
40. McCray W.P. (2006) Amateur Scientists, the International Geophysical Year, and the Ambitions of Fred Whipple. Isis 97: 634–658.
41. Mol A.(2002) The Body Multiple: Ontology in Medical Practice, Durham: Duke University Press.
42. Nissenbaum H.(2010) Privacy in Context: Policy and the Integrity of Social Life, Palo Alto: Stanford University Press.
43. Oudshoorn N.(2011) Telecare Technologies and the Transformation of Healthcare, Basingstoke: Palgrave Macmillan.
44. Panofsky A. (2011) Generating Sociability to Drive Science: Patient Advocacy Organizations and Genetics Research. Social Studies of Science 41(1): 31–57.
45. Pentzold C. (2011) Imagining the Wikipedia Community: What do Wikipedia Authors Mean When they Write about their “Community”? New Media & Society 13(5): 704–721.
46. Piras, E.M. and Zanutto, A. (2010) ‘Prescriptions, X-rays and Grocery Lists: Designing a Personal Health Record to Support (the Invisible Work of) Health Information Management in the Household’, Computer Supported Cooperative Work 19: 585–613.
47. Pols J.(2012) Care at a Distance: On the Closeness of Technology, Amsterdam: Amsterdam University Press.
48. Prainsack B. (2011) Voting with their Mice: Personal Genome Testing and the “Participatory Turn” in Disease Research. Accountability in Research 18(3): 132–147.
49. Savage, M. and Burrows, R. (2007) ‘The Coming Crisis of Empirical Sociology’, Sociology 41(5): 885–899.
50. Shapin, S. and Schaffer, S. (1985) Leviathan and the Air-Pump: Hobbes, Boyle, and the Experimental Life. Princeton: Princeton University Press.
51. Smith, B., Chu, L.K., Smith, T.C., Amoroso, P.J., Boyko, E.J., Hooper, T.I., Gackstetter, G.D., Ryan, M.A. and the Millennium Cohort Study Team (2008) ‘Challenges of Self-reported Medical Conditions and Electronic Medical Records among Members of a Large Military Cohort’, BMC Medical Research Methodology 8(37).
52. Star, S.L. and Griesemer, J.R. (1989) ‘Institutional Ecology, “Translations” and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907–1939’, Social Studies of Science 19(3): 387–420.
53. Sterckx, S., Cockbain, J., Howard, H., Huys, I. and Borry, P. (2012) ‘“Trust is not Something You Can Reclaim Easily”: Patenting in the Field of Direct-to-Consumer Genetic Testing’, Genetics in Medicine, doi: 10.1038/gim.2012.143.
54. 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: e20.
55. Thomas, G. and Wyatt, S. (1999) ‘Shaping Cyberspace: Interpreting and Transforming the Internet’, Research Policy 28: 681–698.
56. Tung, J.Y., Do, C.B., Hinds, D.A., Kiefe, A., Macpherson, J.M., Chowdry, A.B., Francke, U., Naughton, B., Mountain, J., Wojcicki, A. and Eriksson, N. (2011) ‘Efficient Replication of over 180 Genetic Associations with Self-reported Medical Data’, PLos ONE 6(8): e23473.
57. Tutton, R. and Prainsack, B. (2011) ‘Enterprising or Altruistic Selves? Making up Research Subjects in Genetics Research’, Sociology of Health & Illness 33(7): 1081–1095.
58. Waitzkin H.(1991) The Politics of Medical Encounters: How Patients and Doctors Deal with Social Problems, New Haven: Yale University Press.
59. West C. (1984) When the Doctor is a “Lady”: Power, Status and Gender in Physician-Patient Encounters. Symbolic Interaction 7(1): 87–106.
60. White M. (2002) Representations or People? Ethics and Information Technology 4(3): 249–266.
61. 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(5): 411–414.
62. Wyatt, S. (2012) ‘Ethics of e-Research in Social Sciences and Humanities’, pp. 5–20 in D. Heider and A. Massanari (eds) Digital Ethics: Research and Practice. New York: Peter Lang.
63. Zimmer, M. (2008) ‘The Externalities of Search 2.0: The Emerging Privacy Threats When the Drive for the Perfect Search Engine Meets Web 2.0’, First Monday 13(3). URL: http://firstmonday.org/htbin/cgiwrap/bin/ojs/index.php/fm/article/view/2136/1944.
64. Zimmer M. (2010) “But the Data is Already Public”: On the Ethics of Research in Facebook. Ethics and Information Technology 12(4): 313–325.