Internet research and informed consent: An ethical model for using archived emails

International Journal of Therapy and Rehabilitation

Volumn 14, Issue 9, 2007, Pages 396-403

  Watson, Mohinder ^a   Jones, Derek ^b   Burns, Lindsey ^c  

^a Occupational Therapy Queen Margaret University ^*  (Switzerland)

^b QUEEN MARGARET UNIVERSITY   (United Kingdom)

^c GLASGOW CALEDONIAN UNIVERSITY   (United Kingdom)

Author keywords

Archived emails; Informed consent; Internet research; Research ethics

Indexed keywords

EID: 69749127386     PISSN: 17411645     EISSN: 1759779X     Source Type: Journal    
DOI: 10.12968/ijtr.2007.14.9.24580     Document Type: Article

References (54)

1. American Sociological Society (1997) Code of Ethics. http://www.asanet.org/galleries/default - file/Code%20of%20Ethics.pdf (accessed 20 February 2007)
2. Barnes SB (2004) Issues of attribution and identification in online social research. In: Johns MD, Chen SS, Hall GJ, eds. Online Social Research. Methods, Issues and Ethics. Peter Lang, New York: 203–22
3. Berry DM (2004) Internet research; privacy, ethics and alienation: an open source approach. Internet Research 14: 323–32
4. Brennan PF, Moore SM, Smyth KA (1992) Alzheimer’s disease caregivers’ uses of a computer network. West J Nurs Res 14: 662–73
5. Bruckman A (2002) Studying the amateur artist: a perspective on disguising data collected in human subjects research on the internet. Ethics Inf Technol 4: 217–31
6. Burnett G, Buerkle H (2004) Information exchange in virtual communities: A comparative study. Journal of Computer Mediated Communication 9(2) http://jcmc.indiana.edu/issues.html (accessed 27 February 2007)
7. Chen SS, Hall GJ, Johns MD (2004) Research paparazzi in cyberspace: the voices of the researched. In: Johns MD, Chen SS, Hall GJ, eds. Online Social Research. Methods, Issues and Ethics. Peter Lang, New York: 157–75
8. Cline RJW, Haynes KM (2001) Consumer health information seeking on the internet: the state of the art. Health Education Research Theory and Practice 16: 671–92
9. Culver JD, Gerr F, Frumkin H (1997) Medical information on the internet. A study of an electronic bulletin board. J Gen Intern Med 12: 466–70
10. Egdorf K, Rahoi RL (1994) Finding a place where “we all want to hear it”: E-mail as a source of social support. Paper presented at the Speech Communication Association Conference, New Orleans, LA
11. Ess C, Ao IR Ethics working committee (2002) Ethical decision-making and internet research: Recommendations from the AoIR ethics working committee. http://www.aoir.org/reports/ethics.pdf (accessed 20 November 2006)
12. Eysenbach G, Till J E (2001) Ethical issues in qualitative research on internet communities. BMJ 323: 1103–5
13. Finn J, Lavitt M (1994) Computer based self-help groups for sexual abuse survivors. Soc Work Groups 17: 21–46
14. Flicker S, Haans D, Skinner H (2004) Ethical dilemmas in research on internet communities. Qual Health Res 14: 124–34
15. Frankel MS, Siang S (1999) Ethical and legal aspects of human subjects research on the internet: A report of a workshop June 10-11 1999. http://www.aaas.org/spp/dspp/sfrl/projects/intres/report.pdf (accessed 21 November 2006)
16. Grinyer A (2007) The ethics of internet usage in health and personal narratives research. Social Research Update 49: http://sru.soc.surrey.ac.uk/SRU49.html (accessed 21 August 2007) University of Surrey
17. Hall GJ, Frederick D, Johns MD (2004) ‘NEED HELP ASAP!!!’ A feminist communitarian approach to online research ethics. In: Johns MD, Chen SS, Hall GJ, eds. Online Social Research. Methods, Issues and Ethics. Peter Lang, New York: 239–52
18. Hamilton RJ, Bowers BJ (2006) Internet recruitment and e-mail interviews in qualitative studies. Qual Health Res 16: 821–35
19. Herring S (1996) Linguistic and critical analysis of computer-mediated communication: Some ethical and scholarly considerations. The Information Society 12: 153–68
20. Hudson JM, Bruckman A (2004) ‘Go away’: Participant objections to being studied and the ethics of chat room research. The Information Society 20: 127–39
21. Illingworth N (2001) The internet matters: Exploring the use of the internet as a research tool. Sociological Research Online 6(2): http://www.socresonline.org.uk/6/2/illingworth.html (accessed 22 August 2007)
22. Internet World Stats (2007) Internet usage statistics. http://www.Internetworldstats.com/stats.htm (accessed 20 March 2007)
23. Jones S (1999) Doing Internet Research. Critical issues and methods for examining the net. London, Sage
24. King SA (1994). Analysis of electronic support groups for recovering addicts. Interpersonal Computing and Technology: An Electronic Journal for the 21st Century 2 (3): 47–56
25. King S (1996) Researching internet communities: Proposed ethical guidelines for the reporting of results. The Information Society 12: 119–27
26. Kleinman SS (2004) Researching OURNET: A case study of a multiple methods approach. In: Johns MD, Chen SS, Hall GJ, eds. Online Social Research. Methods, Issues and Ethics. Peter Lang, New York: 47–62
27. Klemm P (1998) A non-traditional cancer support group – the internet. Comput Nurs 16: 31–6
28. Kraut J, Olsen J, Banaji M, Bruckman A, Cohen J, Coupar M (2004) Psychological research online. Report of Board of Scientific Affairs Advisory Group on the conduct of research on the internet. Am Psychol 59: 105–17
29. Madge C, O’Connor H (2003) Focus groups in cyberspace: using the internet for qualitative research. Qualitative Market Research: An International journal 6: 133–43
30. Mann C, Stewart F (2000) Internet Communication and Qualitative Research. A Handbook for Researching Online. London, Sage
31. Mayer M, Till J (1996) The internet: A modern Pandora’s box? Qual Life Res 5: 568–71
32. Michalak EE, Szabo A (1998) Guidelines for internet research: An update. European Psychologist 3: 70–5
33. Morley S, Ecclestone C, Williams A (1999) Systematic review and meta–analysis of randomized controlled trials of cognitive behaviour therapy and behaviour therapy for chronic pain in adults, excluding headache. Pain 80: 1–13
34. Morse JM, Field PA (1996) Qualitative Research Methods for Health Professionals. London, Sage Publications
35. Murray CD, Sixsmith J (2002) Qualitative health research via the internet: practical and methodological issues. Health Informatics J 8: 47–53
36. Nochi M (1998) Struggling with the labelled self: people with traumatic brain injuries in social settings. Qual Health Res 8: 665–81
37. Rafaeli S, Sudweeks F, Konstan J, Mabry E (1998) ProjectH: A collaborative quantitative study of computer-mediated communication. In: Sudweeks F, McLaughlin M, Rafaeli S, eds. Network and Netplay, Virtual Groups on the Internet Menlo Park, Cambridge, London: AAAI Press
38. Reid E (1996) Informed consent in the study of online communities: a reflection of the effects of computer mediated social research. The Information Society 12: 169–74
39. Rimer BK, Lyons EJ, Ribisl KM, Bowling JM, Golin CE, Forlenza MJ, Meier A (2005) How new subscribers use cancer-related online mailing lists. J Med Internet Res 7(3): e32
40. Schrum L (1995) Framing the debate: Ethical research in the information age. Qualitative Inquiry 1: 311–26
41. Schrum L (1997) Ethical research in the information age: Beginning the dialog. Comput Human Behav 13: 117–25
42. Selwyn N, Robson K (1998) Using email as a research tool. Social Research Update 21 http://www.soc.surrey.ac.uk/sru/SRU21.html (accessed 10 July 2006)
43. Sharf BF (1997) Communicating breast cancer online: support and empowerment on the internet. Women Health 26: 65–84
44. Sharf BF (1999) Beyond netiquette: the ethics of doing naturalistic discourse research on the internet. In: S Jones, ed. Doing Internet Research: Critical issues and methods for examining the net. Sage Publications, London: 243–56
45. Sixsmith J, Murray CD (2001) Ethical issues in the documentary data analysis of internet posts and archives. Qual Health Res 11: 423–32
46. Suler J (2000) Ethics in Cyberspace Research. In: Psychology of Cyberspace. http://www.rider.edu/∼suler/psycyber/psycyber.html (accessed 18 March 2007)
47. Sullivan CF (2003) Gendered cyber support; A thematic analysis of two online cancer support groups. J Health Psychol 8: 83–103
48. Thomas J (2004) Reexamining the ethics of internet research: Facing the challenge of overzealous oversight. In: Johns MD, Chen CC, Hall GJ, eds. Online Social Research. Methods, Issues and Ethics. Peter Lang, New York: 187–201
49. Walstrom MK (2004) ‘Seeing and Sensing’ Online Interaction: An Interpretive Interactionist Approach to USENET Support Group Research. In: Johns MD, Chen CC, Hall GJ, eds. Online Social Research. Methods, Issues and Ethics. Peter Lang, New York: 81–97
50. Walther JB (2002) Research ethics in internet-enabled research: Human subjects issues and methodological myopia. Internet Research Ethics http://www.nyu.edu/projects/nissenbaum/ethics_wal_full.html (accessed 21 November 2006)
51. Waskul D, Douglas M (1996) Considering the electronic participant: some polemical observations on the ethics of online research. The Information Society 12: 129–39
52. White MH, Dorman SM (2000) Online support for caregivers. Analysis of an internet Alzheimer mail group. Comput Nurs 18: 168–76
53. Winzelberg A (1997) The analysis of an electronic support group for individuals with eating disorders. Comput Human Behav 13: 393–407
54. Winzelberg AJ, Classen C, Alpers GW et al (2003) Evaluation of an internet support group for women with primary breast cancer. Cancer 97: 1164–7