The conceptual and practical ethical dilemmas of using health discussion board posts as research data

Journal of Medical Internet Research

Volumn 15, Issue 6, 2013, Pages

  Bond, Carol S ^a   Ahmed, Osman Hassan ^a   Hind, Martin ^a   Thomas, Bronwen ^a   Hewitt Taylor, Jaqui ^a  

^a BOURNEMOUTH UNIVERSITY   (United Kingdom)

Author keywords

Health; Research design; Research ethics; Social media

Indexed keywords

ARTICLE; HEALTH; INTERNET; METHODOLOGY; RESEARCH ETHICS; SOCIAL MEDIA;

HEALTH; RESEARCH DESIGN; RESEARCH ETHICS; SOCIAL MEDIA;

ETHICS, RESEARCH; INTERNET; RESEARCH DESIGN;

EID: 84881054094     PISSN: None     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.2435     Document Type: Article

References (44)

1. Vance K, Howe W, Dellavalle RP. Social internet sites as a source of public health information. Dermatol Clin 2009 Apr;27(2):133-136. [doi: 10.1016/j.det.2008.11.010] [Medline: 19254656]
2. Lewis PH. In a Recount, Cyber Census Still Confounds.: New York Times; 1996. URL: Http://www.dartmouth.edu/~chance/course/Syllabi/Princeton96/internet- use.html [WebCite Cache ID 6EcveOOIt]
3. Nielsen Wire. 2012 Aug. Top US Web Brands and Technology News Websites URL: Http://blog.nielsen.com/nielsenwire/online-mobile/august-2012-top-u-s-web- brands-and-technology-news-websites/[WebCite Cache ID 6EcvujLDs]
4. Nguyen KD, Hara B, Chlebowski RT. Utility of two cancer organization websites for a multiethnic, public hospital oncology population: Comparative cross-sectional survey. J Med Internet Res 2005 Jul 1;7(3):e28 [FREE Full text] [doi: 10.2196/jmir.7.3.e28] [Medline: 15998619]
5. Glasgow R. Engagement in a diabetes self-management website: Usage patterns and generalizability of program use. J Med Internet Res 2011;13(1):e9. [doi: 10.2196/jmir.1391]
6. Chiauzzi E, Pujol LA, Wood M, Bond K, Black R, Yiu E, et al. painACTION-back pain: A self-management website for people with chronic back pain. Pain Med 2010 Jul;11(7):1044-1058. [doi: 10.1111/j.1526-4637.2010.00879.x] [Medline: 20545873]
7. Seçkn G. Internet Technology in Service of Personal Health Care Management: Patient Perspective. Journal of Technology in Human Services 2009;27(2):79-92.
8. Barney LJ, Griffiths KM, Banfield MA. Explicit and implicit information needs of people with depression: A qualitative investigation of problems reported on an online depression support forum. BMC Psychiatry 2011;11:88 [FREE Full text] [doi: 10.1186/1471-244X-11-88] [Medline: 21592335]
9. Cowie GA, Hill S, Robinson P. Using an online service for breastfeeding support: What mothers want to discuss. Health Promot J Austr 2011 Aug;22(2):113-118. [Medline: 21819353]
10. Armstrong N, Powell J. Patient perspectives on health advice posted on Internet discussion boards: A qualitative study. Health Expect 2009 Sep;12(3):313-320. [doi: 10.1111/j.1369-7625.2009.00543.x] [Medline: 19555377]
11. Williams SG. The Ethics of Internet Research. Online Journal of Nursing Informatics 2012;16(2).
12. Ess C, AoIR EW Committee. Ethical decision-making and Internet research: Recommendations from the aoir ethics working committee.: Association of Internet Researchers; 2002. URL: Http://aoir.org/reports/ethics.pdf [accessed 2013-05-01] [WebCite Cache ID 6Ecw5VM3j]
13. Markham A, Buchanan E. Ethical Decision-Making and Internet Research: Version 2.: Association of Internet Researchers; 2012. URL: Http://aoir.org/ reports/ethics2.pdf [accessed 2013-05-01] [WebCite Cache ID 6Ecw5VM3j]
14. Huws U. Socio-Economic Research in the Information Society. Brighton; 2002. URL: Https://taw.bournemouth.ac.uk/owa/cbond@bournemouth.ac.uk/redir.aspx? C=77678d01ac7543af8079a555d2eb9351&URL=http%3a%2f%2fwww.webcitation. org%2f6EcwD4ys8
15. Department of Health UK. Research governance framework for health and social care. 2005. URL: Http://www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/DH-4108962 [WebCite Cache ID 6EcwKQgWm]
16. Haigh C, Jones NA. An overview of the ethics of cyber-space research and the implication for nurse educators. Nurse Educ Today 2005 Jan;25(1):3-8. [doi: 10.1016/j.nedt.2004.09.003] [Medline: 15607241]
17. Bakardjieva M. Feenberg, A. Involving the Virtual Subject. Ethics and Information Technology 2000;2(4):233-240.
18. Whitehead LC. Methodological and ethical issues in Internet-mediated research in the field of health: An integrated review of the literature. Soc Sci Med 2007 Aug;65(4):782-791. [doi: 10.1016/j.socscimed.2007.03.005] [Medline: 17512105]
19. Holmes S. Methodological and ethical considerations in designing an Internet study of quality of life: A discussion paper. Int J Nurs Stud 2009 Mar;46(3):394-405. [doi: 10.1016/j.ijnurstu.2008.08.004] [Medline: 18838135]
20. McKee HA. Ethical and legal issues for writing researchers in an age of media convergence. Computers and Composition 2008;25(1):104-122.
21. Stewart K, Williams M. Researching online populations: The use of online focus groups for social research. Qualitative Research 2005;5(4):395-416.
22. Capurro R, Pingel C. Ethical issues of online communication research. Ethics and Information Technology 2002;4(3):189-194.
23. Eysenbach G, Till JE. Ethical issues in qualitative research on internet communities. BMJ 2001 Nov 10;323(7321):1103-1105 [FREE Full text] [Medline: 11701577]
24. Flicker S, Haans D, Skinner H. Ethical dilemmas in research on Internet communities. Qual Health Res 2004 Jan;14(1):124-134. [doi: 10.1177/ 1049732303259842] [Medline: 14725180]
25. Powell J, Inglis N, Ronnie J, Large S. The characteristics and motivations of online health information seekers: Cross-sectional survey and qualitative interview study. J Med Internet Res 2011;13(1):e20 [FREE Full text] [doi: 10.2196/jmir.1600] [Medline: 21345783]
26. Fox S. Pew Internet Project. 2011. Peer&to&peer healthcare URL: Http://pewinternet.org/Reports/2011/P2PHealthcare/Summary-of-Findings.aspx [accessed 2013-02-25] [WebCite Cache ID 6Eh0oB6SO]
27. Vanguard. 2012. Facebook Third Largest Country If URL: Http://www.vanguardngr.com/2012/05/facebook-third-largest-country-if/[accessed 2013-02-22] [WebCite Cache ID 6EcwWBrIW]
28. Ahmed OH, Sullivan SJ, Schneiders AG, McCrory P. iSupport: Do social networking sites have a role to play in concussion awareness? Disabil Rehabil 2010;32(22):1877-1883. [doi: 10.3109/09638281003734409] [Medline: 20367328]
29. Bender JL, Jimenez-Marroquin MC, Jadad AR. Seeking support on facebook: A content analysis of breast cancer groups. J Med Internet Res 2011;13(1):e16 [FREE Full text] [doi: 10.2196/jmir.1560] [Medline: 21371990]
30. De la Torre-Díez I, Javier Diaz-Pernas F, Anton-Rodriguez M. A Content Analysis of Chronic Diseases Social Groups on Facebook and Twitter. Telemedicine and e-Health 2012;18(6):404-408.
31. Bournemouth University. Research Ethics Code of Practice. Poole, UK: Bournemouth University; Sep 2009.
32. James N, Busher H. Online interviewing. London: Sage Publications Limited; 2009.
33. Guest G, Bunce A, Johnson L. How Many Interviews Are Enough? Field Methods 2006 Feb;18(1):59.
34. Guba EG, Lincoln YS. Fourth generation evaluation. Newbury Park: Sage Publications; 1989.
35. Flick U. An introduction to qualitative research. London: Sage Publications; 2009.
36. Papacharissi Z. The virtual sphere 2.0: The Internet, the Public Sphere, and Beyond. In: Chadwick A, editor. Routledge Handbook of Internet Politics. London: Routledge; 2009:230-245.
37. Youngs G. Blogging and globalization: The blurring of the public/private spheres. Aslib Proceedings 2009 2009;61(2):127-138. [doi: 10.1108/ 00012530910946884]
38. Sarangi S. Public discourse. In: Zienkowski J, Ostman J, Verschueren J, editors. Handbook of Pragmatics Highlights (HoPH). Amsterdam: John Benjamins; 2011:248.
39. Liu Z, Liu L, Li H. Determinants of information retweeting in microblogging. Internet Research 2012;22(4):443-466.
40. Bassett EH, O'Riordan K. Ethics of Internet research: Contesting the human subjects research model. Ethics and Information Technology 2002;4(3):233-247.
41. Russell CK, Gregory DM. Evaluation of qualitative research studies. Evid Based Nurs 2003 Apr;6(2):36-40 [FREE Full text] [Medline: 12710415]
42. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004 Feb;24(2):105-112. [doi: 10.1016/j.nedt.2003.10.001] [Medline: 14769454]
43. Corden A, Sainsbury R. Using verbatim quotations in reporting qualitative social research: Researchers' views. Social Policy and Research Unit: University of York. York, UK: Social Policy and Research Unit: University of York; 2006.
44. Hudson J, Bruckman A. "Go Away": Participant Objections to Being Studied and the Ethics of Chatroom Research. The Information Society 2004 Apr 2004;20(2):127-139. [doi: 10.1080/01972240490423030]