Abstract
Keywords
What Is Already Known?
Internet research has become increasingly popular due to the central role that online environments play in the lives of many people around the world. Internet content has immense potential for diverse forms of research about various topics including qualitative research about health, illness, and caregiving across the life span. Although ethical guidelines have emerged, the varied nature of online content and diverse research practices make the application of a rigid set of ethical principles problematic. Questions remain regarding many ethical aspects of Internet research including informed consent and confidentiality specifically.
What This Paper Adds?
Diverse approaches to managing ethics in online qualitative research are identified from existing literature, highlighting ethical debate surrounding unobtrusive qualitative research. Critical examination of informed consent and confidentiality along with practical and methodological issues emphasizes the need for ethically aware yet flexible decision-making about the inclusion of personal narratives in unobtrusive qualitative research. In addition, consideration of such ethical issues highlights the importance and methodological benefits of creative approaches to data analysis and representation.
Ethical, Practical, and Methodological Considerations for Unobtrusive Qualitative Research
Narratives of illness and caregiving offer important insight into what it is like to negotiate personal and family health challenges and social support (O’Brien & Clark, 2012; Vindrola-Padros & Johnson, 2014). While qualitative researchers have studied subjective experiences accessed through solicited and unsolicited narratives for decades, there is increasing attention to personal narratives shared on the Internet (Mazanderani & Powell, 2013; Morison, Gibson, Wigginton, & Crabb, 2015). Specifically, the Internet is the site of much communication about illness, caregiving, and health-care interactions among other topics. Individuals share personal accounts in various digital formats, often in “real time,” given the ubiquity of technology (Mazanderani & Powell, 2013, p. 6). These unsolicited narratives provide access to authentic, immediate portrayals of life under specific circumstances that have the potential to generate in-depth understanding and inform health and supportive care. Furthermore, because online accounts are not produced for research purposes, they offer insight into aspects of experience prioritized by the authors (O’Brien & Clark, 2012; Seale, Charteris-Black, MacFarlane, & McPherson, 2010), as well as the narrative structures that they find meaningful. As such, online accounts hold great potential as a source of qualitative research data that can inform discipline-specific practice, education, and research.
However, research about online communication is fraught with ethical debate, and a wide range of stances have emerged regarding what is ethically acceptable in Internet research. Some specific guidelines and recommendations have been developed to provide guidance on an array of ethical issues raised by the inclusion of Internet data in research (Clark et al., 2015; Eysenbach & Till, 2001; Markham & Buchanan, 2012; Roberts, 2015). Despite the value of current literature, variation in research practice persists, suggesting the need for continued discussion of ethical concerns related to the qualitative study of personal accounts shared online. Specifically, additional consideration of informed consent and confidentiality is necessary given their varied management in existing studies. These ethical principles are especially important for qualitative researchers who study personal narratives shared online because of the focus on subjective experiences and their meanings. As such, decisions must be made about the degree to which online content is public and whether it is necessary to obtain informed consent for the inclusion of online content. Additionally, confidentiality and the maintenance of privacy require attention when personal online accounts are included in qualitative research, particularly because data collected from Internet sources are often persistently available and easily traceable (Roberts, 2015).
As such, the purpose of this article is to critically examine issues surrounding informed consent and confidentiality related to unobtrusive qualitative research about personal narratives shared online, as well as practical and methodological considerations. In doing so, we highlight the contingent nature of ethical conduct for online research and echo calls for “situated ethics” in which researchers make decisions based on the situations they encounter (Calvey, 2008, p. 912). Accordingly, we consider specific issues to illustrate why qualitative researchers and institutional review boards should engage in ethical decision-making regarding specific cases, rather than applying a rigid framework. Furthermore, we discuss the potential of innovative approaches to data representation as a means for enhancing confidentiality, such as Markham’s (2012) fabrication approach which addresses complexities related to privacy. This article contributes to the ongoing discussion of ethical issues surrounding qualitative research on online content and the mediated and contingent nature of ethics in research practice (Calvey, 2008). Such recognition can foster ethically aware yet flexible approaches to online qualitative research and creative methodological efforts to overcoming ethical challenges.
The Potential of Internet Content for Qualitative Research
In contemporary Western society, use of technology and the Internet is widespread, with numerous forms of social interaction taking place in digital settings (Kurtz, Trainer, Beresford, Wutich, & Brewis, 2017). Opportunities to interact on the Internet have led to diverse forms of communication and storytelling about personal experiences including experiential accounts of illness, caregiving, and health-care interactions. For example, individuals often share information and experiences via “forums, blogs, videos, social-networks, [and] patient opinion and rating sites” (Mazanderani & Powell, 2013, p. 1). Blogs or online first-person writing about ideas and experiences are a common means for individuals to communicate and interact with others without temporal and geographic constraints (Heilferty, 2009; Kurtz et al., 2017). The increasing use of the Internet to communicate about health, illness, and caregiving reflects individuals’ desire to share and obtain information and establish themselves as authorities on a condition (Barker, 2008). As such, sharing personal narratives can enable individuals to reclaim their own or family member’s illness from biomedical control and contest medical versions based on personal experiences (Barker, 2008; Morison et al., 2015). Thus, the Internet is an important site in which biomedical power can be challenged through social construction of illness by lay individuals.
In keeping with the increasing popularity of the Internet for sharing personal experiences, research about online communication has also become more common (Mazanderani & Powell, 2013; Morison et al., 2015). Qualitative researchers, among others, commonly explore human behavior and experiences through analysis of Internet content. While such research can include digital data generated through online interactions between researchers and individuals, much online content already exists which has been produced for personal reasons rather than research purposes (Markham, 2012). This unsolicited data can offer insight into subjective experiences of life under a variety of circumstances and the meanings assigned to them by authors. For example, existing qualitative research has involved examination of personal narratives produced by individuals and shared via blogs, social media platforms, electronic support groups, and organizational web pages (Barker, 2008; Heilferty, 2011a; Kurtz et al., 2017; Lamprell & Braithwaite, 2017). Such online accounts can contain in-depth knowledge about illness, caregiving, and health-care experiences that can contribute to holistic understanding and improved relationships between patients, families, and health-care providers (O’Brien & Clark, 2012; Seale et al., 2010; Vindrola-Padros & Johnson, 2014).
Research about unsolicited online accounts aligns with observational methods common to ethnographic research, in that researchers observe naturally occurring communication on the Internet as nonparticipant observers (Barker, 2008). The unobtrusive nature of such research means that the online data are naturalistic and not influenced by a researcher’s presence or specific interests (Hookway, 2008), making it “passive analysis” (Eysenbach & Wyatt, 2002). Accordingly, nonparticipant observation of online communication is free from reaction bias that can arise when individuals are aware that they are being researched (Bryman & Bell, 2016). Online accounts of personal experiences are also likely to be focused on issues that individuals themselves believe important, rather than being shaped by research influences and context (O’Brien & Clark, 2012). Consequently, the unobtrusive qualitative study of online content has potential for revealing new knowledge about subjective experiences and their meanings which might not emerge in face-to-face research or solicited accounts (Robinson, 2001; Seale et al., 2010).
Additionally, research that involves the Internet can overcome common barriers to research participation for some populations. For example, certain groups might decline participation in face-to-face research because of the time commitment or the sensitivity of the topic (Gattuso, Hinds, Tong, & Srivastava, 2006). Meanwhile, online research is often viewed as more convenient and can enhance the success of recruitment efforts (Akard, Wray, & Gilmer, 2015). Also, because the Internet is not restricted by geographic and many social barriers, diverse populations including some hard-to-reach groups are potentially more likely to be included in research (Mazanderani & Powell, 2013; Morison et al., 2015). Furthermore, individuals might be more open to discussing sensitive topics online among peers in comparison to research interviews, potentially generating rich and previously unidentified data (Adair, Marcoux, Williams, & Reimer, 2006; Seale et al., 2010). As well, the use of preexisting content can help to avoid re-traumatizing participants by asking them to recall difficult experiences which can be a concern in interview research (Stevens, Lord, Proctor, Nagy, & O’Riordan, 2010). Therefore, web-based data collection can overcome various barriers, particularly when online content has been previously generated for other purposes, as in the case of blogs, social media pages, electronic support forums, and personal accounts on organizational websites.
Examination of online content can also reveal the nature of online social interactions and the role of the Internet in social support processes. For example, Gage and Panagakis (2012) found that parents of children with cancer positively perceived the Internet as a means for accessing social support and connecting with others. For these parents, the Internet was the site of engagement with others with similar experiences that was not limited by geography. Furthermore, parents noted that online communication was a convenient and less emotionally sensitive way to share updates on their child’s well-being. Other studies also reported the value of social media for support purposes, with parents indicating that the platforms Facebook and Twitter allowed them to share family experiences of pediatric cancer and mobilize social support (LaValley, Gage-Bouchard, Mollica, & Beaupin, 2015; Rehman, 2014). As such, communications found on the Internet offer a means for studying social support via online interactions between lay individuals as they occur in real time, whereas face-to-face research interviews tend to focus on reconstructing past occurrences (Seale et al., 2010). Therefore, online content can provide an immediacy that might not be accessed through other data types.
Ethical Guidelines for Internet-Based Research
While there is widespread recognition of key ethical principles for the conduct of research involving humans (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2014), debate remains on how these principles should be applied in specific studies and settings. Specifically, as Calvey (2008) proposed, ethical codes “offer a sanitized picture of social research” that do not necessarily capture what occurs during actual research interactions (p. 912). Furthermore, ethical codes are not always comprehensive or applicable to all types of research, and those developed prior to widespread use of the Internet are not necessarily relevant to the contemporary study of online content (Grinyer, 2007). Accordingly, ethical guidelines have emerged specific to Internet research over the past two decades and continue to evolve. Some of these guidelines pertain to general ethical considerations for Internet research, whereas others are focused on qualitative research about online communication which are briefly outlined here.
In consultation with the Association of Internet Researchers working committee, Markham and Buchanan (2012) explicated broad ethical principles related to various forms of research using Internet data. Rather than specifying rules for ethical research conduct, they proposed a series of questions to help researchers reflect on the context of their research and ethical concerns. For example, they suggested considering the nature of the data and its source; possible harms or benefits to online authors; and how data will be accessed, managed, and presented. In addition, they recommended that researchers engage with existing literature and continue to generate knowledge about ethical decision-making in ever-expanding Internet contexts. Similarly, Clark et al. (2015) emphasized the importance of ethical decision-making, suggesting that the collection of any online content for purposes other than that originally intended requires consideration of the ethical acceptability. In their discussion of broad ethical issues, they recognized various complexities related to authorship and ownership of online data and that ethical principles of consent and anonymity/confidentiality are not practical to uphold in all cases. As such, these authors also avoided proposing concrete guidelines, instead emphasizing the need for ethical decision-making relative to the nature and context of Internet data.
Capturing the contingent nature of ethical decision-making, O’Brien and Clark (2012) developed a model for determining whether ethical approval should be sought for research including Internet data. Based on Robinson’s (2001) prior framework, this model deemed it admissible for unsolicited website content that is unrestricted and in the public domain to be included in research without ethical review. However, O’Brien and Clark (2012) suggested confirming this with individual institutional review boards. Thus, these authors perceived unobtrusive Internet research as involving analysis of published digital texts, similar to print materials, rather than research involving human subjects. As we outline in the subsequent section focused on issues of consent and confidentiality, this ethical stance is reflected in the existing practices of some researchers, whereas others strongly disagree and advocate for a more cautious approach to studying online communication.
Additionally, Roberts (2015) identified nine ethical issues specific to qualitative research about online communities including studies that involve passive observation or active engagement with members in public and private online settings. Among other considerations, the author documented the lack of clarity that can plague researchers’ decisions about whether online spaces are public or private, and if online authors should be identified as the creators of the content. Such examples emphasized that online research can be highly contentious, requiring forethought and ongoing decision-making to avoid unethical conduct, copyright violation, and undue harm to authors (Roberts, 2015). As such, these existing guidelines for Internet research, among others, have identified specific ethical challenges and the ambiguity of what is ethically permissible research practice given the wide range of online content and settings. Furthermore, the range of ethical stances evident in the existing literature attends to the need for ongoing discussion of ethical issues and best practices for Internet research, particularly with respect to consent and confidentiality in unobtrusive qualitative research.
Ethical, Methodological, and Practical Considerations
Studying online narratives of personal experiences requires researchers to make decisions about what is ethical, as well as practical, in the context of their specific study. Given the evolving nature of the Internet and variations in individual and cultural understandings of privacy, ethical decision-making is complex, contingent, and processual (Markham & Buchanan, 2012). When pursuing unobtrusive qualitative research in which researchers passively analyze online content (Eysenbach & Wyatt, 2002), decisions about informed consent and confidentiality emerge as particularly unclear and complex. Therefore, we explore different stances toward managing these ethical principles in research about online communication, along with methodological and practical concerns. Specifically, we consider whether it is ethically necessary and practical to obtain informed consent from authors for the inclusion of their online accounts in research. In addition, we explore whether maintaining the confidentiality of personal information is required when conducting research on publicly available online narratives, along with methodological considerations for upholding the privacy of online authors.
Is Gaining Consent for Unobtrusive Online Research Necessary?
Qualitative research about online communication is surrounded by much ethical debate specific to the issue of consent. When initiating qualitative research about online personal narratives, it is essential for researchers to consider whether gaining informed consent from authors is a necessary step prior to data collection. The existing literature reflects varied decisions made by researchers related to the nature of online content. Foremost, when thinking about the permissibility of including certain online accounts, Eysenbach and Till (2001) recommended that researchers consider where each case falls on the public–private spectrum. They suggested that consent is imperative for use of privately shared information but may not be necessary for content that is publicly accessible. Mazanderani and Powell (2013) elaborated on this assessment, proposing that public online content be evaluated in terms of its perceived level of privacy to determine if consent for inclusion in research should be sought. Specifically, considerations include whether authors appear to be addressing a general or specific audience. These researchers concluded that it is acceptable to include online content in research without obtaining informed consent from the author if it is overtly public or focused at a general audience (Mazanderani & Powell, 2013; Seale et al., 2010). Other researchers such as Barker (2008) and O’Brien and Clark (2012) draw similar conclusions about online content generated by groups of individuals such as in electronic support forums in which privacy is somewhat limited already because of the number of participants.
Similar considerations can also be applied to other sources of online narratives such as blogs and social media pages. Blogs have emerged as a common way to communicate about everyday life, typically involving the sharing of personal experiences with either an implicit or explicit audience in mind (Hookway, 2008). Social media platforms are also very popular and provide individuals online space to share information about themselves and interact with others either publicly or privately. Thus, authors can choose whether to restrict access to their pages or remain anonymous by using pseudonyms or withholding personal information (Kurtz et al., 2017; Miller, Pole, & Bateman, 2011). Accordingly, individuals who share information and stories on publicly accessible websites without password requirements are likely aware that their posts might be read by others they do not know. Hookway (2008) proposes that the somewhat anonymous and less socially visible nature of blogs is appealing to authors, as it enables them to be more candid about their experiences. As such, the relatively public nature of blogging in comparison to more private forms of communication such as e-mail and private social media pages might indicate that online authors wish for their communications to reach public audiences.
Subsequently, researchers might decide that online content that is overtly public or relatively anonymous can be included in research without consent, such as personal narratives shared on publicly accessible websites. For example, Lamprell and Braithwaite (2017) studied autobiographical accounts of melanoma obtained from organizational websites without requesting consent, deeming them to be explicitly public and unrestricted in terms of their use. In this case and others, ethical decision-making relies on framing this type of Internet data as emerging from public spaces which aligns with unobtrusive observation of real-life behavior in open settings (Barker, 2008; O’Brien & Clark, 2012). Thus, these researchers view seeking consent as unnecessary because they are not actively intervening or interacting in public online settings (Eysenbach & Wyatt, 2002). Furthermore, researchers might also forego seeking consent to study online accounts when the findings will be presented in aggregate or anonymized forms (Barker, 2008; O’Brien & Clark, 2012), meaning that individual contributions cannot be identified.
Despite these conclusions, some researchers advocate for a more conservative approach to the issue of consent, believing that online authors should always be informed and asked to consent for the inclusion of their personal accounts in research because they were not produced for such purposes (Clark et al., 2015; Heilferty, 2011b; Markham, 2012). This belief is especially relevant to sensitive topic research in which inclusion of digital content in research could affect the integrity of the online setting. For example, Heilferty (2011b) suggested that inclusion of online content that is highly personal and sensitive in nature can expose authors to multiple types of harm. Furthermore, collection of data from online communities intended for support purposes can compromise the purpose of the group and exploit members’ vulnerability (Roberts, 2015). Subsequently, seeking consent is viewed as imperative in these cases to ensure that authors are aware of potential vulnerabilities and can weigh these against the anticipated benefits of the research. As such, researchers might also reflect on the nature of the online narratives or content they wish to study and if harm could potentially arise from inclusion of personal content in research. If the level of vulnerability is deemed high, greater precaution can be employed by researchers and consent sought from online authors. Therefore, the nature of the research topic and online setting should be considered in ethical decision-making about consent.
Researchers must also determine whether there are restrictions on the usage of the content or whether online accounts are considered public domain (Mazanderani & Powell, 2013). For example, some websites, including social media platforms, can place limitations on third-party use of their content (Morison et al., 2015). Such considerations further complicate the issue of consent in that researchers must determine whether permission is needed from the owner or moderator of specific websites that host publicly available personal accounts, as well as individual authors. Furthermore, some authors or website owners might also retain copyright of online content (Barker, 2008), meaning that any representation requires citation of the source. Researchers must, therefore, decide whether consent is needed to include copyrighted content in research or whether appropriate citation in the research findings is sufficient. Accordingly, qualitative researchers should consider ethical principles and legal regulations in decisions about consent to study online personal accounts.
Is Gaining Consent for Unobtrusive Online Research Practical?
In addition to decisions about whether it is ethically permissible to include publicly accessible online accounts in qualitative research, practical issues must also be considered. Namely, obtaining informed consent requires contacting authors of online content which can range from being very simple to complicated and potentially intrusive. Mazanderani and Powell (2013) suggested that some authors are easily reached to request permission for the inclusion of their online accounts because contact information is provided. For example, authors of online accounts can potentially be contacted through details provided on the website or via the social media or blog page, easily allowing researchers to inform them of the nature of the research and ask for consent. In many cases, such efforts can be directed specifically to the author, such as by e-mail or direct message, rather than through public posts. However, some web forums, blogs, and similar online settings might require researchers to post publicly which raises the possibility of disrupting the online setting (Mazanderani & Powell, 2013). Specifically, authors might react to a researcher’s post by altering the nature of their online communications, ceasing them altogether, or changing the privacy settings. As well, other members of the online community might stop posting supportive comments to the author if they believe that a researcher is studying them which can have unintended negative implications. Thus, researchers need to consider the possibility of reactive effects or perceived intrusion into personal or group conversations resulting from a public request for consent.
Furthermore, when authors’ contact information is not readily available, nor is there a space for public postings, seeking consent becomes difficult. In some cases, authors might choose to omit contact information or share their online account in a relatively anonymous way such as by using pseudonyms or not identifying personal details because they wish to share their experiences without divulging their identity. Consequently, efforts to seek consent might require researchers to search the Internet for authors’ contact information which can be more intrusive than inclusion of their online content without permission. Additionally, some online settings, such as electronic support forums, can have numerous members with frequent turnover in membership, making it very complicated if not impossible to obtain consent from all members (Barker, 2008). As such, researchers should consider whether seeking consent from online authors is practical and appropriate given the specific nature of the online communication, and if doing so could pose an intrusion on authors’ privacy or have unintended consequences for the online setting. Such considerations should be clearly communicated to institutional review boards to demonstrate how such practical issues impede seeking consent.
Is Ensuring Confidentiality Necessary When Publicly Available Online Content Is Included in Research?
Conducting qualitative research in online settings also raises questions about confidentiality and whether researchers are responsible for maintaining the privacy of authors who have shared personal narratives in publicly accessible online settings. Confidentiality is a particularly important consideration in unobtrusive qualitative research because online communications were not produced for research purposes (Markham, 2012), and data can be easily traced through searches of the Internet (Roberts, 2015). As outlined above, some researchers suggested that authors who share personal accounts online are aware that they are not private; some go as far as explicitly stating their preference to be cited correctly (Kurtz et al., 2017). However, decisions about the extent to which confidentiality should be maintained for online authors who do not indicate such wishes are complex and go beyond the perceived level of privacy of a specific account (Heilferty, 2011b; Markham, 2012; Markham & Buchanan, 2012). Namely, decisions about confidentiality depend on the specifics of the research as well as methodological and ethical considerations.
Foremost, researchers might assess the nature of the Internet research that they wish to study including whether identifying information accompanies online content and the degree of vulnerability of authors and their social networks (Heilferty, 2011b). Maintenance of confidentiality can be less of an issue in cases where limited personal information is included, as is common with short narratives presented on organizational websites. Thus, it could be deemed ethically acceptable to present direct excerpts from online accounts as part of the research findings because limited personal details would be revealed if traced. Additionally, cases where data are produced by many individuals, such as in online discussion forums, do not require the same considerations for confidentiality because it is more difficult to identify and connect an idea to a specific individual (Barker, 2008). However, cautious researchers can nonetheless choose to maximize privacy by de-identifying online sources and authors’ personal characteristics such as name, gender, age, or geographic location.
Decisions about confidentiality also relate to whether informed consent will be sought from online authors. If consent is requested, issues of confidentiality can also be broached with authors and the level of privacy desired by individuals ascertained (Roberts, 2015). In cases where confidentiality is preferred, researchers should explain the extent to which this is possible and the steps that will be taken (Heilferty, 2011b). If direct quotations from authors’ online accounts will be disseminated, researchers should acknowledge the possibility that the source could be traced and identified (Roberts, 2015). In some cases, consent for inclusion of personal accounts might depend on acknowledgment of authorship of specific quotations and ideas, similar to copyrighted material (Kurtz et al., 2017; Mazanderani & Powell, 2013). As such, researchers might also use the consent process to discuss issues of author autonomy and proprietary control in relation to their online content (Heilferty, 2011b). Attribution of authorship is essential for copyrighted material, as well as information that is widely recognizable as emerging from a certain author such as personal details associated with a charitable organization. Subsequently, decisions about confidentiality should also involve determining if credit should be given to authors for certain ideas.
If informed consent is not sought for inclusion of online accounts that contain personal information, nor are authors’ preferences evident, researchers’ obligation to protect the authors’ identities is likely heightened. Specifically, the assumption cannot be made that publicly sharing information equates to authors’ approval of the dissemination of their personal characteristics and traceable account excerpts with research findings. Accordingly, qualitative researchers must consider the extent to which it is necessary and ethically appropriate to reveal authors’ personal details or quote them directly when disseminating research findings. One aspect of this decision should involve evaluating the level of sensitivity of the research topic and the context of the online data (Markham & Buchanan, 2012). As with consent, confidentiality is deemed more crucial in sensitive topic research because there is potential for identification to cause harm to or exacerbate the vulnerability of authors and their social networks (Heilferty, 2011b). Researchers should, therefore, determine that the benefits of the research outweigh any potential for harm in such cases (Roberts, 2015) and make efforts to minimize harm to the greatest extent possible through steps toward complete confidentiality. Accordingly, careful consideration should be given to possibilities for protecting Internet authors’ privacy and minimizing the traceability of data from online accounts.
How Can Confidentiality Be Maintained When Online Narratives Are Easily Traceable on the Internet?
Qualitative researchers commonly present quotations, or raw data, to illustrate specific ideas when disseminating research findings. However, the convenience of tracing data gleaned from online sources poses a significant threat to confidentiality in comparison to sharing information from other sources of qualitative data. As such, researchers must consider ways of maximizing the privacy of online authors in relation to their methodological approach and plan for conducting the research. In some instances, identifying details can be deleted or quotations can be altered slightly or paraphrased to avoid traceability, in addition to de-identifying the source (Roberts, 2015). Alternatively, when several personal online accounts are included in a study, common ideas and experiences can be aggregated and presented as a broad meta-narrative that reflects the trajectory of multiple individuals’ experiences (Lamprell & Braithwaite, 2017).
Researchers can also adopt creative ways for presenting research findings that minimize the degree to which personal details and exact quotations are shared. For example, privacy can be maximized by adoption of a fabrication approach to data representation (Markham, 2012), as well as withholding personal information. Drawing upon the idea of “bricolage,” this approach involves creation of “composite accounts or representational interactions” (Markham, 2012, p. 334). Analysis is focused on identifying commonalities across the data and using these categories to compose illustrative cases that reflect similarities and variations in the sample. Details and ideas emerging from multiple accounts are blended into a smaller number of composites to convey common experiences across individuals. As a result, personal characteristics and direct quotations are not presented, ensuring authors’ privacy because their identity cannot be easily searched on the Internet. The fabrication approach broadens the focus of qualitative research to the patterns evident in several experiential accounts (Markham, 2012), rather than only attending to individual circumstances. Consequently, production of multiple composite cases can capture commonalities and variations across the sample in a meaningful way, while also being a sufficiently rigorous analytic approach to avoid inappropriate generalizations.
Additionally, a fabrication approach to analysis and presentation of qualitative data has the potential to maximize the quality of the findings and degree of interpretation. Specifically, generation of composite cases requires consideration of the context of the data and its meaning, and effort to assure that suitable content and tone is conveyed (Markham, 2012). As such, the process of analyzing data and generating composites is lengthy, and interpretive integrity emerges from researchers’ in-depth engagement with the data. Successful implementation of a fabrication approach also requires researchers to demonstrate extensive interpretive confidence through the crafting of composite cases (Markham, 2012). Namely, qualitative findings can vary from being literal descriptions of the data to highly interpretive, with more interpretive research involving greater transformation of the data into abstract concepts or explanations (Sandelowski & Barroso, 2003). Therefore, fabrication aligns with a more interpretive approach because it involves constructing data into useful knowledge through the analytic process and transformation of shared aspects of experience into composite cases (Markham, 2012). Fabrication thus has methodological and ethical benefits for qualitative research.
Creation of composite cases from thematic categories can also produce comprehensive findings that are accessible to diverse audiences and do not require knowledge of a specific research methodology (Sandelowski & Leeman, 2012). For example, composite cases that take the form of condensed narrative accounts can convey the common experiences of a certain population to an audience in an insightful, easy to understand way. Furthermore, the concreteness of composite cases can bolster their potential amenability for translation into interventions or program implementation in health and supportive care because they are a more explicit outcome in comparison to some other ways of presenting qualitative findings (Sandelowski & Leeman, 2012). As such, adoption of a fabrication approach can have important implications for the product of qualitative research and its impact on health and supportive care, or similar applied settings.
Additionally, a fabrication approach to data analysis and presentation aligns well with narrative methodology. Specifically, such research focuses on how stories are told through an analytic focus on the narrative structures and performative aspects employed to convey experiences, rather than purely content (Riessman, 2008). Consequently, researchers can generate composite cases based on analysis of personal narratives that reflect the linguistic and cultural resources that authors draw upon to narrate their stories (Riessman, 1993). Similar to Frank’s (1995) narrative types, the composite cases can offer “listening devices” for understanding individuals’ experiences and how they make sense of them. Thus, transformation of several personal accounts into a smaller number of composite cases can be an accessible way to communicate commonalities and variations in experience and their narrativization. Furthermore, dissemination of composite cases can be a powerful means for enhancing awareness and empathy in diverse audiences (Frank, 1995).
The Call for Ethical Awareness and Flexibility
This overview of ethical, practical, and methodological considerations highlights the complexity of conducting unobtrusive qualitative research on online content. While many researchers have identified challenges and offered guidance for ethical conduct of Internet research, there are varied stances evident in existing research practice. Such variations reflect the evolving nature of Internet research, as well as differing views on how ethical principles should be applied in the study of online content. It is imperative that ethical guidelines for online qualitative research account for the situated nature of ethical decision-making and divergence of theory and practice (Calvey, 2008). As such, our discussion illuminates the imperative to avoid rigid application of ethical dichotomies. Instead, decisions about ethical issues should be contingent on the nature and source of the online content and include attention to ethical principles, practicalities, and methodological concerns.
Decisions about consent and confidentiality figure prominently in qualitative research because of the common focus on subjective views and experiences. However, management of these ethical issues can be more ambiguous for Internet researchers in comparison to face-to-face qualitative research. In some cases, the importance of negotiating consent and confidentiality is relatively obvious, such as when research involves active engagement with individuals online or content that is privately shared (Eysenbach & Till, 2001). However, in the case of unobtrusive analysis of preexisting content that is publicly accessible, there is less clarity regarding how consent and confidentiality should be managed. This ambiguity is reflected in the range of practices evident in existing research involving unobtrusive online research (Barker, 2008; Heilferty, 2011a; Kurtz et al., 2017; Lamprell & Braithwaite, 2017). As such, researchers cannot simply follow existing guidelines but must engage in decision-making based on the nature of the topic and online data sources they wish to study.
Therefore, researchers should approach decisions on a case-by-case basis as to whether to seek consent from online authors or maintain confidentiality of their personal details and accounts. With respect to consent, researchers will need to consider where a source falls on the public–private spectrum, the intended audience, and the sensitivity of the topic, as well as practical challenges for obtaining consent (Eysenbach & Till, 2001; Heilferty, 2011b; Markham &Buchanan, 2012; Mazanderani & Powell, 2013). Foremost, researchers must decide whether online accounts are cultural products open to being studied (public) or personal communications that require consent for inclusion in research (private) (Heilferty, 2011b). In addition, decisions will have to be made about who to ask for consent for inclusion of blog, social media, electronic support forum, or similar content, given that authorship might be unclear, involve multiple individuals, or be retained by owners of websites (Barker, 2008). Furthermore, researchers need to identify appropriate ways for requesting consent that do not infringe on participants’ privacy or disrupt the integrity of online settings (Mazanderani & Powell, 2013). In some cases, it might not be possible to contact authors, which raises questions about whether online content can then be included in research or not.
Ethical considerations related to confidentiality rely on decisions about consent, in addition to practical and methodological concerns. For example, issues related to confidentiality can be broached if consent is obtained from online authors, allowing discussion of threats to privacy and their preferences. However, in cases where consent is not sought from authors, researchers must evaluate the potential for harm to arise from inclusion of online narratives in qualitative research. If the potential for harm exists, researchers should attempt to minimize this as much as possible and ensure that the research yields sufficient benefit to justify any harm. Decisions about whether privacy should be maintained also depend on the nature of the data and sensitivity of the topic, as well as issues related to authorship and copyright (Kurtz et al., 2017; Mazanderani & Powell, 2013). Thus, researchers will need to address an array of concerns related to confidentiality and take steps to acknowledge authors’ autonomy (Heilferty, 2011b), while also respecting that their accounts were not generated for research purposes and some degree of confidentiality might be desired (Roberts, 2015).
In addition to attending to ethical principles, preparation for qualitative analysis of online content from sources such as blogs, social media pages, and electronic support forums requires researchers to engage in methodological considerations. Namely, issues of confidentiality also relate to how data will be analyzed and formulated into research findings. Therefore, decisions about whether confidentiality is desirable and feasible have implications for the format and presentation of the findings, in addition to authors’ privacy. The incorporation of innovative approaches, such as a fabrication approach (Markham, 2012), have potential ethical benefits in that they can minimize the extent to which online authors’ words are traceable. Furthermore, such approaches foster high-quality analyses that move beyond topical analysis of data to a more robust level of interpretation (Sandelowski & Barroso, 2003). Such efforts involve drawing interpretive connections between experiential accounts and higher level conceptualization of data into composite cases. Furthermore, the incorporation of fabrication (Markham, 2012) into narrative research can support creation of composites of narrative content, structure, and/or performative aspects based on multiple personal accounts. The resultant composite cases offer meaningful and accessible means for representing commonalities and variations in experiences, and in turn enhancing understanding in others.
Conclusion
This exploration of ethical, practical, and methodological aspects of unobtrusive qualitative research involving online narratives highlights key decisions facing researchers and contributes to the ongoing discussion of best practices. It is imperative that qualitative researchers and institutional review boards are aware of the complexities related to consent for inclusion and confidentiality of online content. Namely, along with consideration of copyright issues and restrictions for use, decisions must be made about whether it is necessary and practical to gain consent from online authors who share unsolicited experiential accounts publicly online. Additionally, researchers must decide whether confidentiality of personal information shared online is necessary and feasible, raising the need for methodological innovation in data representation to enhance privacy of online authors whose accounts are included in qualitative research. Attention to such issues can enhance both ethical and methodological aspects of unobtrusive qualitative research about online narratives.