Informed consent may be unobtainable in online contexts. This article examines the difficulties of obtaining informed consent online through a Facebook case study. It is proposed that there are at least two ways informed consent could be waived in research: first, if the data are public, and second, if the data are textual. Accordingly, the publicness of the Facebook News Feed is considered. Taking account of the wide availability of Facebook users’ data, and reflecting on how public those users perceive (...) their information to be, this paper argues that some Facebook data are properly viewed as public to semi-public in nature. A second issue is whether the Facebook News Feed data collection ought to be classified as document-based or human subjects research. Since the Facebook News Feed involves social interaction that may elicit ‘ethically important moments’, this paper proposes that observing it may constitute human subjects research. While informed consent is desirable for human subjects research, it is suggested that Facebook News Feed observations are comparable to observational research in a public space, and thus waiving informed consent in this online setting could be justifiable. (shrink)

Social networking sites such as MySpace and virtual communities such as on-line support groups can be a rich source of data for researchers. These sites can be an effective way of reaching and researching young people in order to address their particular health needs. Internet-based research is also potentially risky and exploitative. There is some guidance for conducting research online, but there are no detailed or universally accepted ethics guidelines for research of webspaces such as MySpace or virtual communities in (...) which young people participate. One question that arises is — If MySpace is a public webspace, can research be done without consent? In this paper I investigate ethical issues surrounding young people’s consent in cyber research. I identify issues that help determine whether consent is needed, offer suggestions for dealing with consent in cyberspace and add my voice to the call for a resource of case studies — indispensible in the development of guidelines and the education of researchers and research ethics committees. (shrink)

The internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of (...) potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a ‘report’ button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them. (shrink)

The article ties together codified ethical premises, proceedings of ethical reasoning, and field-specific ethical reflections so to inform the ethnography of an Internet-based collaborative project. It argues that instead of only obeying formal statutes, practical judgment has to account for multiple understandings of ethical issues in the research field as well as for the self-determination of reflexive participants. The article reflects on the heuristics that guided the decisions of a 4-year participant observation in the English-language and German-language editions of Wikipedia. (...) Employing a microsociological perspective, it interrogates the technological, social, and legal implications of publicness and information sensitivity as core ethical concerns among Wikipedia authors. The first problem area of managing accessibility and anonymity contrasts the handling of the technologically available records of activities, disclosures of personal information, and the legal obligations to credit authorship with the authors’ right to work anonymously and the need to shield their identity. The second area confronts the contingent addressability of editors with the demand to assure and maintain informed consent. Taking into account these problem areas, the ethical reasoning on the one hand proposes options for observing and documenting episodes. On the other, it provides advice on the feasibility and the necessity of obtaining informed consent. (shrink)

Increasingly, the Internet is proving to be an important research tool. Today, cyberspace affords researchers easy access to traditionally difficult to reach populations, a host of virtual communities, and a wealth of data created through computer-mediated-communication. This newfound research frontier brings with it, however, a multiplicity of ethical concerns, including: (1) whether the Internet constitutes a private or public space; (2) whether the human subject paradigm is appropriate when considering the ethics of Internet research; and (3) whether cyber participants/‘speakers-as-writers’ and (...) communities should be guaranteed confidentiality and anonymity when researchers contain or consider them in research. This paper examines these specific ethical concerns as they relate to Canada's Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, which, as yet, does not explicitly address ethics involved in Internet research. I propose that in large part the Internet is by definition a public site of activity, and as such, many posters cannot expect their texts to remain confidential, nor their names anonymous, and that the human subject paradigm is highly problematic in terms of regulating ethics involved in some research generated through new information technologies. This is most expressly the case with computer-mediated-communication, which, in light of the Tri-Council Policy Statement, can be viewed as theoretically akin to public entertainment and performance. (shrink)

Death and bereavement are human experiences that new media helps facilitate alongside creating new social grief practices that occur online. This study investigated how people’s postings and tweets facilitated the communication of grief after pop music icon Michael Jackson died. Drawing on past grief research, religion, and new media studies, a thematic analysis of 1,046 messages was conducted on three mediated sites (Twitter, TMZ.com, and Facebook). Results suggested that social media served as grieving spaces for people to accept Jackson’s death (...) rather than denying it or expressing anger over his passing. The findings also illustrate how interactive exchanges online helped recycle news and “resurrected” the life of Jackson. Additionally, as fans of deceased celebrities create and disseminate web-based memorials, new social media practices such as “Michael Mondays” synchronize tweets within everyday life rhythms and foster practices to hasten the grieving process. (shrink)

The aims of this study were to present themes in nursing motifs as depicted in tattoos and to describe how it reflects upon nursing in popular culture as well as within professional nursing culture. An archival and cross‐sectional observational study was conducted online to search for images of nursing tattoos that were freely available, by utilizing the netnographic methodology. The 400 images were analyzed in a process that consisted of four analytical steps focusing on metaphors and meanings in the tattoos. (...) The findings present four themes: angels of mercy and domination; hegemonic nursing technology; embodying the corps; and nurses within the belly of the monster. The tattoos serve as a mirror of popular culture and the professional culture of nurses and nursing practice within the context of body art. Body art policy statements have been included in nursing personnel dress code policies. Usually these policies prohibit tattoos that are sexist, symbolize sex or could contribute and reproduce racial oppression. The results show that the tattoos can be interpreted according to several layers of meanings in relation to such policies. We therefore stress that this is an area highly relevant for further analyses in nursing research. (shrink)

There are growing discontinuities between the research practices of data science and established tools of research ethics regulation. Some of the core commitments of existing research ethics regulations, such as the distinction between research and practice, cannot be cleanly exported from biomedical research to data science research. Such discontinuities have led some data science practitioners and researchers to move toward rejecting ethics regulations outright. These shifts occur at the same time as a proposal for major revisions to the Common Rule—the (...) primary regulation governing human-subjects research in the USA—is under consideration for the first time in decades. We contextualize these revisions in long-running complaints about regulation of social science research and argue data science should be understood as continuous with social sciences in this regard. The proposed regulations are more flexible and scalable to the methods of non-biomedical research, yet problematically largely exclude data science methods from human-subjects regulation, particularly uses of public datasets. The ethical frameworks for Big Data research are highly contested and in flux, and the potential harms of data science research are unpredictable. We examine several contentious cases of research harms in data science, including the 2014 Facebook emotional contagion study and the 2016 use of geographical data techniques to identify the pseudonymous artist Banksy. To address disputes about application of human-subjects research ethics in data science, critical data studies should offer a historically nuanced theory of “data subjectivity” responsive to the epistemic methods, harms and benefits of data science and commerce. (shrink)

These CQ Sources were compiled by Bette Anton.

The purpose of this article is to illuminate the conceptualisations and applications of the Belmont Report’s key ethical principles of respect for persons, beneficence, and justice based on a document analysis of five of the most relevant disciplinary guidelines on internet research in the social sciences. These seminal documents are meant to provide discipline-specific guidance for research design and implementation and are regarded as key references when conducting research online. Our analysis revealed that the principles of respect and beneficence were (...) explicitly conveyed in the documents analysed, offering nuanced interpretations on issues of informed consent, privacy, and benefits and risks as well as providing recommendations for modifying traditional practices to fit the online setting. However, the invocations of the principle of justice were rather implicit and reflect an important shift from the Belmont Report’s protectionist ethical position towards more situational and dialogic approaches. With the rapidly evolving nature of internet technologies, this analysis is projected to contribute to the ongoing developments in research ethics in the social sciences by outlining the tensions and implications of the use of the internet as a methodological tool. We also seek to provide recommendations on how disciplinary associations can proceed to facilitate ethically sensitive internet research. (shrink)