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

dc.contributor.authorWatson, Mohinder
dc.contributor.authorJones, Derek
dc.contributor.authorBurns, L.
dc.date.accessioned2018-06-29T21:41:15Z
dc.date.available2018-06-29T21:41:15Z
dc.date.issued2007-09
dc.description.abstractEthical conduct involving research participants rests on the Belmont principles of autonomy, beneficence and justice. Novel methods present new challenges in safeguarding these principles. The increasing use of data obtained from the internet in health research raises important questions regarding obligations to people posting personal information online. Ethical issues warrant special consideration since guidelines are only beginning to emerge, placing greater onus on the researcher's discretion. This paper presents a model (a synthesis of the work of Eysenbach and Till (2001) and Kraut et al (2004)) to assist in decision-making regarding obtaining or waiving informed consent when using archived emails from websites. For illustrative purposes, the application of the model to a PhD project is described.
dc.description.eprintid2240
dc.description.facultysch_occ
dc.description.ispublishedpub
dc.description.number9
dc.description.referencetextAmerican Sociological Society (1997) Code of Ethics. h t t p : / /www. a s a n e t . o rg / g a l l e r i e s / d e f a u l t - f i l e / Code%20of%20Ethics.pdf (accessed 20 February 2007) 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 Berry DM (2004) Internet research; privacy, ethics and alienation: an open source approach. Internet Research 14: 323-32 Brennan PF, Moore SM, Smyth KA (1992) Alzheimer's disease caregivers' uses of a computer network. West J Nurs Res 14: 662-73 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 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) 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 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 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 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 Ess C, AoIR 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) Eysenbach G, Till J E (2001) Ethical issues in qualitative research on internet communities. BMJ 323: 1103-5 Finn J, Lavitt M (1994) Computer based self-help groups for sexual abuse survivors. Soc Work Groups 17: 21-46 Flicker S, Haans D, Skinner H (2004) Ethical dilemmas in research on internet communities. Qual Health Res 14: 124-34 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) 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 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 Hamilton RJ, Bowers BJ (2006) Internet recruitment and email interviews in qualitative studies. Qual Health Res 16: 821-35 Herring S (1996) Linguistic and critical analysis of compu-ter-mediated communication: Some ethical and scholarly considerations. The Information Society 12: 153-68 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 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) Internet World Stats (2007) Internet usage statistics. http:// www.Internetworldstats.com/stats.htm (accessed 20 March 2007) Jones S (1999) Doing Internet Research. Critical issues and methods for examining the net. London, Sage 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 King S (1996) Researching internet communities: Proposed ethical guidelines for the reporting of results. The Information Society 12: 119-27 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 Klemm P (1998) A non-traditional cancer support group - the internet. Comput Nurs 16: 31-6 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 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 Mann C, Stewart F (2000) Internet Communication and Qualitative Research. A Handbook for Researching Online. London, Sage Mayer M, Till J (1996) The internet: A modern Pandora's box? Qual Life Res 5: 568-71 Michalak EE, Szabo A (1998) Guidelines for internet research: An update. European Psychologist 3: 70-5 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 Morse JM, Field PA (1996) Qualitative Research Methods for Health Professionals. London, Sage Publications Murray CD, Sixsmith J (2002) Qualitative health research via the internet: practical and methodological issues. Health Informatics J 8: 47-53 Nochi M (1998) Struggling with the labelled self: people with traumatic brain injuries in social settings. Qual Health Res 8: 665-81 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 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 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 Schrum L (1995) Framing the debate: Ethical research in the information age. Qualitative Inquiry 1: 311-26 Schrum L (1997) Ethical research in the information age: Beginning the dialog. Comput Human Behav 13: 117-25 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) Sharf BF (1997) Communicating breast cancer online: support and empowerment on the internet. Women Health 26: 65-84 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 Sixsmith J, Murray CD (2001) Ethical issues in the documentary data analysis of internet posts and archives. Qual Health Res 11: 423-32 Suler J (2000) Ethics in Cyberspace Research. In: Psychology of Cyberspace. http://www.rider.edu/~suler/psycyber/psycyber. html (accessed 18 March 2007) Sullivan CF (2003) Gendered cyber support; A thematic analysis of two online cancer support groups. J Health Psychol 8: 83-103 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 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 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) Waskul D, Douglas M (1996) Considering the electronic participant: some polemical observations on the ethics of online research. The Information Society 12: 129-39 White MH, Dorman SM (2000) Online support for caregivers. Analysis of an internet Alzheimer mail group. Comput Nurs 18: 168-76 Winzelberg A (1997) The analysis of an electronic support group for individuals with eating disorders. Comput Human Behav 13: 393-407 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
dc.description.statuspub
dc.description.volume14
dc.format.extent396-403
dc.identifierER2240
dc.identifier.citationWatson, M., Jones, D. and Burns, L. (2007) ‘Internet research and informed consent: An ethical model for using archived emails’, International Journal of Therapy and Rehabilitation, 14(9), pp. 396–403. Available at: https://doi.org/10.12968/ijtr.2007.14.9.24580.
dc.identifier.doihttp://10.12968/ijtr.2007.14.9.24580
dc.identifier.issn1741-1645
dc.identifier.urihttps://doi.org/10.12968/ijtr.2007.14.9.24580
dc.identifier.urihttps://eresearch.qmu.ac.uk/handle/20.500.12289/2240
dc.publisherMark Allen Healthcare
dc.relation.ispartofInternational Journal of Therapy and Rehabilitation
dc.titleInternet research and informed consent: An ethical model for using archived emails
dc.typearticle
dcterms.accessRightsrestricted
qmu.authorJones, Derek
rioxxterms.typearticle

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