Utilizing social media to study information-seeking and ethical issues in gene therapy

Journal of Medical Internet Research

Volumn 15, Issue 3, 2013, Pages

  Robillard, Julie M ^a   Whiteley, Louise ^b   Johnson, Thomas Wade ^a   Lim, Jonathan ^a   Wasserman, Wyeth W ^a   Illes, Judy ^a  

^a UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^b Capital Region   (Denmark)

Author keywords

Content analysis; Ethics; Gene therapy; Public opinion; Social media

Indexed keywords

ARTICLE; ATTITUDE TO HEALTH; GENE THERAPY; HUMAN; INFORMATION SERVICE; MEDICAL ETHICS; SOCIAL MEDIA;

ATTITUDE TO HEALTH; ETHICS, MEDICAL; GENETIC THERAPY; HUMANS; INFORMATION SERVICES; SOCIAL MEDIA;

EID: 84877252085     PISSN: None     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.2313     Document Type: Article

References (48)

1. Bainbridge JW, Smith AJ, Barker SS, Robbie S, Henderson R, Balaggan K, et al. Effect of gene therapy on visual function in Leber's congenital amaurosis. N Engl J Med 2008 May 22;358(21):2231-2239. [doi: 10.1056/NEJMoa0802268] [Medline: 18441371]
2. Wilson, JM. The History and Promise of Gene Therapy. Genetic Engineering & Biotechnology News 2011 Oct;31(17):62-65.
3. Petersen A. Biofantasies: genetics and medicine in the print news media. Soc Sci Med 2001 Apr;52(8):1255-1268. [Medline: 11281408]
4. King NM, Cohen-Haguenauer O. En route to ethical recommendations for gene transfer clinical trials. Mol Ther 2008 Mar;16(3):432-438. [doi: 10.1038/mt.2008.13] [Medline: 18297094]
5. Rabino I. Gene therapy: ethical issues. Theor Med Bioeth 2003;24(1):31-58. [Medline: 12735489]
6. Couzin J, Kaiser J. Gene therapy. As Gelsinger case ends, gene therapy suffers another blow. Science 2005 Feb 18;307(5712):1028. [doi: 10.1126/science.307.5712.1028b] [Medline: 15718439]
7. Savulescu J. Harm, ethics committees and the gene therapy death. J Med Ethics 2001 Jun;27(3):148-150 [FREE Full text] [Medline: 11417019]
8. Calnan M, Montaner D, Horne R. How acceptable are innovative health-care technologies? A survey of public beliefs and attitudes in England and Wales. Soc Sci Med 2005 May;60(9):1937-1948. [doi: 10.1016/j.socscimed.2004.08.058] [Medline: 15743645]
9. Macer DR. Public acceptance of human gene therapy and perceptions of human genetic manipulation. Hum Gene Ther 1992 Oct;3(5):511-518. [doi: 10.1089/hum.1992.3.5-511] [Medline: 1420449]
10. Singer E, Corning A. The polls-trends: Genetic testing, engineering, and therapy. Public Opinion Quarterly 1998;62(4):633.
11. Barr M, Rose D. The great ambivalence: factors likely to affect service user and public acceptability of the pharmacogenomics of antidepressant medication. Sociol Health Illn 2008 Sep;30(6):944-958. [doi: 10.1111/j.1467-9566.2008.01116.x] [Medline: 18761513]
12. Shaughnessy J. Research Methods in Psychology, 7th ed. New York: Mcgraw-Hill Education; 2005.
13. O'Connor B, Balasubramanyan R, Routledge BR, Smith NA. From tweets to polls: Linking text sentiment to public opinion time series. In: Proceedings of the International AAAI Conference on Weblogs and Social Media. 2010 Presented at: International AAAI Conference on Weblogs and Social Media; May 23-26, 2010; Washington, DC p. 122-129.
14. Scanfeld D, Scanfeld V, Larson EL. Dissemination of health information through social networks: twitter and antibiotics. Am J Infect Control 2010 Apr;38(3):182-188. [doi: 10.1016/j.ajic.2009.11.004] [Medline: 20347636]
15. Kozinets RV. Netnography: Doing Ethnographic Research Online. California: Sage Publications Ltd; 2009.
16. Chou WY, Hunt Y, Folkers A, Augustson E. Cancer survivorship in the age of YouTube and social media: a narrative analysis. J Med Internet Res 2011;13(1):e7 [FREE Full text] [doi: 10.2196/jmir.1569] [Medline: 21247864]
17. Eysenbach G. Infodemiology and infoveillance: framework for an emerging set of public health informatics methods to analyze search, communication and publication behavior on the Internet. J Med Internet Res 2009;11(1):e11 [FREE Full text] [doi: 10.2196/jmir.1157] [Medline: 19329408]
18. Eysenbach G. Infodemiology and infoveillance tracking online health information and cyberbehavior for public health. Am J Prev Med 2011 May;40(5 Suppl 2):S154-S158. [doi: 10.1016/j.amepre.2011.02.006] [Medline: 21521589]
19. Eysenbach G. Infodemiology: tracking flu-related searches on the web for syndromic surveillance. AMIA Annu Symp Proc 2006:244-248 [FREE Full text] [Medline: 17238340]
20. Zimmerman RK, Wolfe RM, Fox DE, Fox JR, Nowalk MP, Troy JA, et al. Vaccine criticism on the World Wide Web. J Med Internet Res 2005;7(2):e17 [FREE Full text] [doi: 10.2196/jmir.7.2.e17] [Medline: 15998608]
21. Bucchi M. Science in society: an introduction to social studies of science. New York, NY: Routledge; 2004.
22. Rose N. The politics of life itself: biomedicine, power, and subjectivity in the twenty-first century. Princeton, NJ: Princeton University Press; 2007.
23. Wilsdon J, Willis R. See-Through Science. London, UK: Demos; 2004.
24. Gregory J, Miller S. Science in public: communication, culture, and credibility. Cambridge, Mass: Perseus Publishing; 2000.
25. Racine E, Bar-Ilan O, Illes J. fMRI in the public eye. Nat Rev Neurosci 2005 Feb;6(2):159-164 [FREE Full text] [doi: 10.1038/nrn1609] [Medline: 15685221]
26. Bucchi M. Handbook of public communication of science and technology. New York: Routledge; 2008.
27. Mandavilli A. Peer review: Trial by Twitter. Nature 2011 Jan 20;469(7330):286-287. [doi: 10.1038/469286a] [Medline: 21248816]
28. Rodder S, Franzen M, Weingart P. The Sciences' Media Connection. Public Communication and Its Repercussions. London, UK: Springer; 2011.
29. Wolinsky H. More than a blog. EMBO reports 2011;12(11):1102-1105.
30. Chou WS, Hunt YM, Beckjord EB, Moser RP, Hesse BW. Social media use in the United States: implications for health communication. J Med Internet Res 2009;11(4):e48 [FREE Full text] [doi: 10.2196/jmir.1249] [Medline: 19945947]
31. Pickersgill MD. Research, engagement and public bioethics: promoting socially robust science. J Med Ethics 2011 Nov;37(11):698-701 [FREE Full text] [doi: 10.1136/jme.2010.041954] [Medline: 21673017]
32. Taylor PL. Rules of engagement. Nature 2007 Nov 8;450(7167):163-164. [doi: 10.1038/450163a] [Medline: 17994064]
33. Einsiedel EF, Geransar R. Framing genetic risk: trust and credibility markers in online direct-to-consumer advertising for genetic testing. New Genetics and Society 2009 Dec;28(4):339-362.
34. Einsiedel EF, Jones M, Brierley M. Cultures, Contexts and Commitments in the Governance of Controversial Technologies: US. UK and Canadian Publics and Xenotransplantation Policy Development. Science and Public Policy 2011;38(8):619-628.
35. Denzin NK, Lincoln YS. The SAGE Handbook of Qualitative Research. California: Sage Publications; 2005.
36. Tashakkori A, Creswell JW. Editorial: The New Era of Mixed Methods. Journal of Mixed Methods Research 2007;1(1):3-7.
37. Macer DR, Akiyama S, Alora AT, Asada Y, Azariah J, Azariah H, et al. International perceptions and approval of gene therapy. Hum Gene Ther 1995 Jun;6(6):791-803. [doi: 10.1089/hum.1995.6.6-791] [Medline: 7548279]
38. Scully JL, Rippberger C, Rehmann-Sutter C. Non-professionals' evaluations of gene therapy ethics. Soc Sci Med 2004 Apr;58(7):1415-1425. [doi: 10.1016/S0277-9536(03)00336-8] [Medline: 14759686]
39. Bubela T, Hagen G, Einsiedel E. Synthetic biology confronts publics and policy makers: challenges for communication, regulation and commercialization. Trends Biotechnol 2012 Mar;30(3):132-137. [doi: 10.1016/j.tibtech.2011.10.003] [Medline: 22119159]
40. Greenberg AJ, McCormick J, Tapia CJ, Windebank AJ. Translating gene transfer: a stalled effort. Clin Transl Sci 2011 Aug;4(4):279-281 [FREE Full text] [doi: 10.1111/j.1752-8062.2011.00297.x] [Medline: 21884516]
41. Doing-Harris KM, Zeng-Treitler Q. Computer-Assisted Update of a Consumer Health Vocabulary Through Mining of Social Network Data. J Med Internet Res 2011;13(2):e37 [FREE Full text] [doi: 10.2196/jmir.1636] [Medline: 21586386]
42. Ressler PK, Bradshaw YS, Gualtieri L, Chui KK. Communicating the experience of chronic pain and illness through blogging. J Med Internet Res 2012;14(5):e143 [FREE Full text] [doi: 10.2196/jmir.2002] [Medline: 23092747]
43. Horst M. In Search of Dialogue: Staging Science Communication in Consensus Conferences. In: Cheng D, editor. Communicating Science in Social Contexts: New models, new practices. Netherlands: Springer; 2008.
44. Benigeri M, Pluye P. Shortcomings of health information on the Internet. Health Promot Int 2003 Dec;18(4):381-386 [FREE Full text] [Medline: 14695369]
45. Nisbet MC. Public Opinion About Stem Cell Research and Human Cloning. Public Opin Q 2004;68(1):131-154.
46. Racine E, Waldman S, Palmour N, Risse D, Illes J. "Currents of hope": neurostimulation techniques in U.S. and U.K. print media. Camb Q Healthc Ethics 2007;16(3):312-316. [Medline: 17695623]
47. Johansson V, Garwicz M, Kanje M, Röcklinsberg H, Schouenborg J, Tingström A. Beyond Blind Optimism and Unfounded Fears: Deep Brain Stimulation for Treatment Resistant Depression. Neuroethics 2011 May:1-15.
48. Janssens A, Kraft P. Research conducted using data obtained through online communities: ethical implications of methodological limitations. PLoS Med 2012;9(10):e1001328 [FREE Full text] [doi: 10.1371/journal.pmed.1001328] [Medline: 23109913]