Reflections on the ethics of Internet newsgroup research

Bradley, Stephen; Carter, Bernie

doi:10.1016/j.ijnurstu.2011.10.018

Cited by 11 publications

(6 citation statements)

References 28 publications

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“…There has been a growing use of forums in research, particularly health research and, to a lesser extent, debate and dialog around the ethical implications of this practice [22-24], but there has been a dearth of research directly exploring forum participants’ perceptions and expectations of public and private spaces online. Bond et al [10] interviewed users of online diabetes discussion boards.…”

Section: Introductionmentioning

confidence: 99%

“I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions

2016

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BackgroundThe ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members.ObjectiveThere has been very little research regarding how privacy is experienced and enacted online. The objective of this study is to address this gap by qualitatively exploring the expectations of privacy on Internet forums among individuals with long-term conditions.MethodsSemistructured interviews were conducted with 20 participants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 21 participants with type 1 and 2 diabetes mellitus, and were analyzed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups.ResultsThe findings indicate that privacy online is a nebulous concept. Rather than individuals drawing a clear-cut distinction between what they would and would not be comfortable sharing online, it was evident that these situations were contextually dependent and related to a number of unique and individual factors.ConclusionsInterviewees were seen to carefully manage how they presented themselves on forums, filtering and selecting the information that they shared about themselves in order to develop and maintain a particular online persona, while maintaining and preserving an acceptable level of privacy.

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Section: Introductionmentioning

confidence: 99%

“I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions

2016

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“…The British Psychological Society [53] recognizes that although informed consent might not be achievable in this context, certain steps can be taken to protect the participants. Therefore, only data from publicly accessible forums, where users are made aware during the initial sign-up process that all posts are open to public access, were used [54]. Furthermore, as comments on large public forums are less identifiable than those on smaller, private online communities [55], data was only obtained from large forums (for the purposes of this research, a large forum was defined as forums with over 1000 members) [55].…”

Section: Methodsmentioning

confidence: 99%

Safety of Electronic Cigarette Use During Breastfeeding: Qualitative Study Using Online Forum Discussions

Johnston¹,

Campbell²,

Coleman³

et al. 2019

J Med Internet Res

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Background Electronic cigarettes (e-cigs) are an increasingly popular alternative to smoking, helping to prevent relapse in those trying to quit and with the potential to reduce harm as they are likely to be safer than standard cigarettes. Many women return to smoking in the postpartum period having stopped during pregnancy, and while this can affect their decisions about breastfeeding, little is known about women’s opinions on using e-cigs during this period. Objective The aim of this study is to explore online forum users’ current attitudes, motivations, and barriers to postpartum e-cig use, particularly as a breastfeeding mother. Methods Data were collected via publicly accessible (identified by Google search) online forum discussions, and a priori codes identified. All transcripts were entered into NVivo for analysis, with a template approach to thematic analysis being used to code all transcripts from which themes were derived. Results Four themes were identified: use, perceived risk, social support and evidence, with a number of subthemes identified within these. Women were using e-cigs to prevent postpartum return to smoking, but opinions on their safety were conflicting. They were concerned about possible transfer of harmful products from e-cigs via breastmilk and secondhand exposure, so they were actively seeking and sharing information on e-cigs from a variety of sources. Although some women were supportive of e-cig use, others provided harsh judgement for mothers who used them. Conclusions E-cigs have the potential to reduce the number of women who return to smoking in the postpartum period and potentially improve breastfeeding rates, if breastfeeding mothers have access to relevant and reliable information. Health care providers should consider discussing e-cigs with mothers at risk of returning to smoking in the postpartum period.

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“…There is debate over whether the harvesting and use of such data for research purposes should be conceptualised A c c e p t e d M a n u s c r i p t 11 as human subject research (requiring ethical consideration) or merely as secondary textual analysis (Bradley & Carter, 2012). Related to this debate is whether the producers of this material should be viewed as research participants or as authors (Beaulieu & Estalella, 2012).…”

Section: Should Existing Data Within Online Communities Be Treated Asmentioning

confidence: 99%

“…Passive data collection online, such as the harvesting of discussion board postings, may provide large quantities of data for analysis. However, the data is limited by the inability to ask follow-up A c c e p t e d M a n u s c r i p t 19 questions (Battles, 2010;Haigh & Jones, 2005) and the need to accept posts at face value (Bradley & Carter, 2012). Online postings, in comparison to interviews, typically have an immediate future orientation, include the provision of informational and emotional support, provide greater detail and are less filtered by self-presentational concerns (Seale, CharterisBlack, MacFarlane, & McPherson, 2010).…”

Section: Is the Data Obtained Online Of Sufficient Quality For Researmentioning

confidence: 99%

Ethical Issues in Conducting Qualitative Research in Online Communities

Roberts

2015

Qualitative Research in Psychology

134

109

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Increasingly, psychologists are extending their research to include online methods of data collection. Psychologists' use of qualitative data obtained or generated online for research purposes poses unique challenges because of the 'traceability' of quotes, often sensitive content of data and potential impact on both individuals and online communities. In this paper, working within a framework that goes beyond 'procedural ethics' to examine 'ethics in practice', ethical issues associated with conducting qualitative research within online communities are identified.These include tensions over public/private space, authorship versus human research participants, informed consent, anonymity and pseudonymity, covert research, deceptive research identities, reactions to being researched and the quality of data obtained. Prior to conducting qualitative research in online communities, researchers have an ethical obligation to identify and weigh possible risks and benefits to both the community and community members. Sensitivity to the specific online community and continued ethical consideration throughout the conduct and reporting of the research are required.

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Reflections on the ethics of Internet newsgroup research

Cited by 11 publications

References 28 publications

“I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions

“I Always Vet Things”: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions

Safety of Electronic Cigarette Use During Breastfeeding: Qualitative Study Using Online Forum Discussions

Ethical Issues in Conducting Qualitative Research in Online Communities

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