Successful technologies’ ubiquity changes uses, users and ethicolegal responsibilities and duties of care. We focus on dementia to review critically ethicolegal implications of increasing use of social networking sites (SNS) by those with compromised decision-making capacity, assessing concerned parties’ responsibilities. Although SNS contracts assume ongoing decision-making capacity, many users’ may be compromised or declining. Resulting ethicolegal issues include capacity to give informed consent to contracts, protection of online privacy including sharing and controlling data, data leaks between different digital platforms, and (...) management of digital identities and footprints. SNS uses in healthcare raise additional issues. Online materials acting as archives of ‘the self’ bolster present and future identities for users with compromised capacity. E-health involves actual and potential intersection of data gathered for the purpose of delivering health technological support with data used for social networking purposes. Ethicolegal guidance is limited on the implications of SNS usage in contexts where users have impaired/reduced capacity to understand and/or consent to sharing personal data about their health, medication or location. Vulnerable adults and family/carers face uncertainty in regard to consent, data protection, online identity and legal liabilities. Ethicolegal responsibilities and duties of care of technology providers, healthcare professionals, regulatory bodies and policymakers need clarification. (shrink)

#ThisFlag movement was started by Pastor Evan Mawarire in April 2016 bemoaning the collapse of the Zimbabwean economy at the hands of the Zimbabwe African National Union-Patriotic Front (ZANU-PF) government under President Robert Mugabe. Although it started off as accidental, it, however, galvanised disparate groups and enabled them to transform anger against the state from online media to the streets. #ThisFlag movement officially started on the 20th of April 2016, when Pastor Mawarire wearing the Zimbabwean flag posted a video to (...) his Facebook page decrying the state of the economy and what he felt was government’s neglect of its duties to serve the citizens of Zimbabwe. Although one government minister described Mawarire’s actions as a ‘pastor’s fart in the corridors of power’, the reaction by the state security agents points to the contrary. Street protests have been banned. This article interrogates the transformation of #ThisFlag movement from an online struggle to street protests that have turned violent. It also looks at other movements that are complementing #ThisFlag and how the state is responding to these protests both on the social media and on the ground. Evan Mawarire may be considered as an unusual voice from the ever mushrooming new church establishments. As such, it becomes a point of interest to find out what voice there is, which represents what is commonly viewed as mainline churches. Such a voice is identified as coming from Bishop Raymond Mpandasekwa of the Roman Catholic Diocese of Chinhoyi who in one of his sermons delivered an acerbic attack on Mnangagwa’s government as a ‘blood thirsty’ government. The study explored the messages of Mawarire and Mpandasekwa using the socio-theological lenses as guided by Rawls’ theory of civil disobedience. Contribution: This study locates #ThisFlag activism in the context of toxic transformative politics in Zimbabwe. In addition, it contributes to our understanding of the relationship between religion and politics in an unstable political and economic setting. It calls for a re-thinking of the role of the church in Zimbabwean society and discusses the state’s response to those deemed to be not towing the line. It shows that while some religious organisations and groups are too keen to be co-opted by the regime, some have effectively resisted this and have become combative as they fight for people’s rights. Another important contribution is located in how these pastor-cum-activists have harnessed social media to amplify their voices and to reach huge audiences beyond the pulpit. The study is important because it contextualises the role of religion in the country’s contemporary politics, and this fits into the scope of the journal in that it is a multidisciplinary study of both religion and politics. (shrink)

This paper presents an ethical framework designed to support the development of critical data literacy for research methods courses and data training programmes in higher education. The framework we present draws upon our reviews of literature, course syllabi and existing frameworks on data ethics. For this research we reviewed 250 research methods syllabi from across the disciplines, as well as 80 syllabi from data science programmes to understand how or if data ethics was taught. We also reviewed 12 data ethics (...) frameworks drawn from different sectors. Finally, we reviewed an extensive and diverse body of literature about data practices, research ethics, data ethics and critical data literacy, in order to develop a transversal model that can be adopted across higher education. To promote and support ethical approaches to the collection and use of data, ethics training must go beyond securing informed consent to enable a critical understanding of the techno-centric environment and the intersecting hierarchies of power embedded in technology and data. By fostering ethics as a method, educators can enable research that protects vulnerable groups and empower communities. (shrink)

The paper problematises the reliability and ethics of using social media data, such as sourced from Twitter or Instagram, to carry out health-related research. As in many other domains, the opportunity to mine social media for information has been hailed as transformative for research on well-being and disease. Considerations around the fairness, responsibilities and accountabilities relating to using such data have often been set aside, on the understanding that as long as data were anonymised, no real ethical or scientific issue (...) would arise. We first counter this perception by emphasising that the use of social media data in health research can yield problematic and unethical results. We then provide a conceptualisation of methodological data fairness that can complement data management principles such as FAIR by enhancing the actionability of social media data for future research. We highlight the forms that methodological data fairness can take at different stages of the research process and identify practical steps through which researchers can ensure that their practices and outcomes are scientifically sound as well as fair to society at large. We conclude that making research data fair as well as FAIR is inextricably linked to concerns around the adequacy of data practices. The failure to act on those concerns raises serious ethical, methodological and epistemic issues with the knowledge and evidence that are being produced. (shrink)

This article is a theoretical and empirical exploration of the meaning that accompanies contractual agreements, such as the End-User License Agreements (EULAs) that participants of online communities are required to sign as a condition of participation. As our study indicates, clicking “I agree” on the often lengthy conditions presented during the installation and updating process typically permits third parties (including researchers) to monitor the digitally-mediated actions of users. Through our small-scale study in which we asked participants which terms of EULAs (...) they would find agreeable, the majority confirmed that they simply clicked through the terms presented to them without much knowledge about the terms to which they were agreeing. From a research ethics standpoint, we reflect upon whether or not informed consent is achieved in these cases and pose a challenge to the academic research community to attend to the socio-technical shift from informed consent to a more nebulous concept of contractual agreement, online and offline. (shrink)

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)

The proliferation of digital data and internet-based research technologies is transforming the research landscape, and researchers and research ethics communities are struggling to respond to the ethical issues being raised. This paper discusses the findings from a collaborative project that explored emerging ethical issues associated with the expanding use of digital data for research. The project involved consulting with researchers from a broad range of disciplinary fields. These discussions identified five key sets of issues and informed the development of guidelines (...) orientated to meet the needs of researchers and ethics committee members. We argue that establishing common approaches to assessing ethical risks of research involving digital data will promote consistency in the ethical standards for research, enable the smooth functioning of ethics committees, and sustain public confidence in research. We conclude with recommendations for the development of educational resources for ethics committees, data management guidelines and further public education. (shrink)

Experimental design is one aspect of a scientific method. A well-designed, properly conducted experiment aims to control variables in order to isolate and manipulate causal effects and thereby maximize internal validity, support causal inferences, and guarantee reliable results. Traditionally employed in the natural sciences, experimental design has become an important part of research in the social and behavioral sciences. Experimental methods are also endorsed as the most reliable guides to policy effectiveness. Through a discussion of some of the central concepts (...) associated with experimental design, including controlled variation and randomization, this chapter will provide a summary of key ethical issues that tend to arise in experimental contexts. In addition, by exploring assumptions about the nature of causation and by analyzing features of causal relationships, systems, and inferences in social contexts, this chapter will summarize the ways in which experimental design can undermine the integrity of not only social and behavioral research but policies implemented on the basis of such research. (shrink)

Revelations of personal matters often have negative consequences for social-media users. These consequences trigger frequent warnings, practical rather than moral in nature, that social-media users should consider carefully what they reveal about themselves since their revelations might cause them various difficulties in the future. I set aside such practical considerations and argue that social-media users have a moral obligation to maintain their own privacy that is rooted in the duty to self-censor. Although Anita L. Allen provides a paternalist justification of (...) the duty that supports my position that social-media users are obligated to self-censor what they reveal about themselves, I justify the obligation through considerations that are more palatable to liberals than is paternalism. I accomplish this by arguing that the failure to self-censor often creates for others undue burdens that individuals are obligated morally not to create. In particular, social-media revelations often create undue burdens for those, such as employers and university personnel, who are obligated morally to respect individuals’ privacy in their decision-making processes. I also demonstrate that this argument is not for a broad duty to self-censor, but, rather, for a narrow duty that applies to particular circumstances such as certain uses of social media. (shrink)

We defend public anonymity in the light of the threat posed by digital technology. Once people could reasonably assume that they were fairly anonymous when they left the house. They neither drove nor walked around with GPS devices; they paid their highway tolls in cash; they seldom bought on credit; and no cameras marked their strolls in the park or their walks down the street. Times have changed. We begin with a brief discussion of the concept of anonymity. We then (...) argue that public anonymity helps promote privacy in public. Next, we argue that public anonymity is worth protecting insofar as it promotes autonomy. After that we attempt to show how digital technology threatens public anonymity in the context of CCTV and GPS devices. We argue for a significant scaling back of public surveillance. We close with some thoughts on what we take to be the gratuitous costs imposed on those who would attempt to preserve their anonymity in public. (shrink)

Contemporary literature investigating the significant impact of technology on our lives leads many to conclude that ethics must be a part of the discussion at an earlier stage in the design process i.e., before a commercial product is developed and introduced. The problem, however, is the question regarding how ethics can be incorporated into an earlier stage of technological development and it is this question that we argue has not yet been answered adequately. There is no consensus amongst scholars as (...) to the kind of ethics that should be practiced, nor the individual selected to perform this ethical analysis. One school of thought holds that ethics should have pragmatic value in research and design and that it should be implemented by the engineers and/or scientists themselves, while another school of thought holds that ethics need not be so pragmatic. For the latter, the ethical reflection can aim at a variety of goals, and be carried out by an ethicist. None of the approaches resulting from these lines of thinking have been adopted on a wide-scale basis. To that end, the approach presented here is intended to bridge the gap between these schools of thought. It is our contention that ethics ought to be pragmatic and to provide utility for the design process and we maintain that adequate ethical reflection, and all that it entails, ought to be conducted by an ethicist. Thus, we propose a novel role for the ethicist—the ethicist as designer—who subscribes to a pragmatic view of ethics in order to bring ethics into the research and design of artifacts—no matter the stage of development. In this paper we outline the series of steps that a pragmatic value analysis entails: uncovering relevant values, scrutinizing these values and, working towards the translation of values into technical content. In conclusion, we present a list of tasks for the ethicist in his/her role as designer on the interdisciplinary team. (shrink)

The proliferation of social media and web 2.0 applications (Facebook, MySpace, Twitter, blogs, etc.) in the previous 5 years has created a new social research opportunity, with over an estimated 552 million active daily users on Facebook (Facebook Press 2012). As with all research, boundaries must be set out to create valid and accurate data, keeping ethical practices at the forefront of the data gathering process. The lack of standardized practices requires an in-depth look into the use of such methods, (...) with focus on four major areas: 1) security for the individual, 2) anonymity, 3) safety and 4) use of mined data and information gathered by either passive or active means. (shrink)

While public administration research is thriving because of increased attention to social scientific rigor, lingering problems of methods and ethics remain. This article investigates the reporting of ethics approval within public administration publications. Beginning with an overview of ethics requirements regarding research with human participants, I turn to an examination of human participants protections for public administration research. Next, I present the findings of my analysis of articles published in the top five public administration journals over the period from 2000 (...) to 2012, noting the incidences of ethics approval reporting as well as funding reporting. In explicating the importance of ethics reporting for public administration research, as it relates to replication, reputation, and vulnerable populations, I conclude with recommendations for increasing ethics approval reporting in public administration research. (shrink)

Since its onset, scholars have characterized social media as a valuable source for data collection since it presents several benefits (e.g. exploring research questions with hard-to-reach populations). Nonetheless, methods of online data collection are riddled with ethical and methodological challenges that researchers must consider if they want to adopt good practices when collecting and analyzing online data. Drawing from our primary research project, where we collected passive online data on Reddit, we explore and detail the steps that researchers must consider (...) before collecting online data: (1) planning online data collection; (2) ethical considerations; and (3) data collection. We also discuss two atypical questions that researchers should also consider: (1) how to handle deleted user-generated content; and (2) how to quote user-generated content. Moving on from the dichotomous discussion between what is public and private data, we present recommendations for good practices when collecting and analyzing qualitative online data. (shrink)

Concerned researchers of online forums might implement what Bruckman (2002) referred to as disguise. Heavy disguise, for example, elides usernames and rewords quoted prose so that sources are difficult to locate via search engines. This can protect users (who might be members of vulnerable populations, including minors) from additional harms (such as harassment or additional identification). But does disguise work? I analyze 22 Reddit research reports: 3 of light disguise, using verbatim quotes, and 19 of heavier disguise, using reworded phrases. (...) I test if their sources can be located via three different search services (i.e., Reddit, Google, and RedditSearch). I also interview 10 of the reports’ authors about their sourcing practices, influences, and experiences. Disguising sources is effective only if done and tested rigorously; I was able to locate all of the verbatim sources (3/3) and many of the reworded sources (11/19). There is a lack of understanding, among users and researchers, about how online messages can be located, especially after deletion. Researchers should conduct similar site-specific investigations and develop practical guidelines and tools for improving the ethical use of online sources. (shrink)

Purpose Existing algorithms for predicting suicide risk rely solely on data from electronic health records, but such models could be improved through the incorporation of publicly available socioeconomic data – such as financial, legal, life event and sociodemographic data. The purpose of this study is to understand the complex ethical and privacy implications of incorporating sociodemographic data within the health context. This paper presents results from a survey exploring what the general public’s knowledge and concerns are about such publicly available (...) data and the appropriateness of using it in suicide risk prediction algorithms. Design/methodology/approach A survey was developed to measure public opinion about privacy concerns with using socioeconomic data across different contexts. This paper presented respondents with multiple vignettes that described scenarios situated in medical, private business and social media contexts, and asked participants to rate their level of concern over the context and what factor contributed most to their level of concern. Specific to suicide prediction, this paper presented respondents with various data attributes that could potentially be used in the context of a suicide risk algorithm and asked participants to rate how concerned they would be if each attribute was used for this purpose. Findings The authors found considerable concern across the various contexts represented in their vignettes, with greatest concern in vignettes that focused on the use of personal information within the medical context. Specific to the question of incorporating socioeconomic data within suicide risk prediction models, the results of this study show a clear concern from all participants in data attributes related to income, crime and court records, and assets. Data about one’s household were also particularly concerns for the respondents, suggesting that even if one might be comfortable with their own being used for risk modeling, data about other household members is more problematic. Originality/value Previous studies on the privacy concerns that arise when integrating data pertaining to various contexts of people’s lives into algorithmic and related computational models have approached these questions from individual contexts. This study differs in that it captured the variation in privacy concerns across multiple contexts. Also, this study specifically assessed the ethical concerns related to a suicide prediction model and determining people’s awareness of the publicness of select data attributes, as well as which of these data attributes generated the most concern in such a context. To the best of the authors’ knowledge, this is the first study to pursue this question. (shrink)

ABSTRACT Data from digital technologies are increasingly integrated in public health research. In April of 2020, we interviewed a subset of participants who completed a survey approximately one month earlier. Using the survey, we contacted and interviewed participants who had expressed their willingness or unwillingness to share digital data for use in public health. We followed a directed content analysis approach for the analysis of the interview data. Among participants who had reported being unwilling to share data, concerns about privacy, (...) confidentiality, and the purpose of the research were cited. During the interviews, 76.9% of the participants who had who had previously indicated that they were unwilling to share their data, expressed willingness to share data in order to assist with COVID-19 prevention. Our results contribute to our understanding of people’s perspectives on sharing personal data and of the way their perspectives can vary as a function of potential uses of their personal information. (shrink)

This article argues for the right to nonparticipation for Global Digital Citizenship. It recuperates the notion of political nonparticipation in the context of information and communication technologies and GDC in order to show that nonparticipation can operate effectively in non-State spheres, particularly online. The paper begins with a discussion of nonparticipation in the context of Nation States and non-Statal Organizations before offering a brief survey of the terms Global Citizenship, Digital Citizenship, and GDC. Nonparticipation in an online context is then (...) explained, followed by a discussion of practical concerns, such as who might enforce GDC rights among global digital citizens. (shrink)

The recent proliferation of AI scandals led private and public organisations to implement new ethics guidelines, introduce AI ethics boards, and list ethical principles. Nevertheless, some of these efforts remained a façade not backed by any substantive action. Such behaviour made the public question the legitimacy of the AI industry and prompted scholars to accuse the sector of ethicswashing, machinewashing, and ethics trivialisation—criticisms that spilt over to institutional AI ethics boards. To counter this widespread issue, contributions in the literature have (...) proposed fixes that do not consider its systemic character and are based on a top-down, expert-centric governance. To fill this gap, we propose to make use of qualified informed lotteries: a two-step model that transposes the documented benefits of the ancient practice of sortition into the selection of AI ethics boards’ members and combines them with the advantages of a stakeholder-driven, participative, and deliberative bottom-up process typical of Citizens’ Assemblies. The model permits increasing the public’s legitimacy and participation in the decision-making process and its deliverables, curbing the industry’s over-influence and lobbying, and diminishing the instrumentalisation of ethics boards. We suggest that this sortition-based approach may provide a sound base for both public and private organisations in smart societies for constructing a decentralised, bottom-up, participative digital democracy. (shrink)

Although ethical guidelines for doing Internet research are available, most prominently those of the Association of Internet Researchers ( www.aoir.org ), ethical decision-making for research on publicly available, naturally-occurring data remains a major challenge. As researchers might also turn to others to inform their decisions, this article reviews recent research papers on publicly available, online data. Research involving forums such as Facebook pages, Twitter, YouTube, news comments, blogs, etc. is examined to see how authors report ethical considerations and how they (...) quote these data. We included 132 articles published in discourse analysis-oriented journals between January 2017 and February 2020. Roughly one third of the articles (85 out of 132) did not discuss ethical issues, mostly claiming the data were publicly available. Quotations nevertheless tended to be anonymized, although retrievability of posts was generally not taken into account. In those articles in which ethical concerns were reported, related decisions appeared to vary substantially. In most cases it was argued that informed consent was not required. Similarly, approval from research ethics committees was mostly regarded unnecessary. Other ethical issues like consideration of users’ expectations and intentions, freedom of choice, possible harm, sensitive topics, and vulnerable groups were rarely discussed in the articles. We argue for increased attention to ethical issues and legal aspects in discourse analytic articles involving online data beyond mentioning general concerns. Instead, we argue for more involvement of users/participants in ethical decision-making, for consideration of retrievability of posts and for a role for journal editors. (shrink)

The speed of development in Big Data and associated phenomena, such as social media, has surpassed the capacity of the average consumer to understand his or her actions and their knock-on effects. We are moving towards changes in how ethics has to be perceived: away from individual decisions with specific and knowable outcomes, towards actions by many unaware that they may have taken actions with unintended consequences for anyone. Responses will require a rethinking of ethical choices, the lack thereof and (...) how this will guide scientists, governments, and corporate agencies in handling Big Data. This essay elaborates on the ways Big Data impacts on ethical conceptions. (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)

Purpose – Ubiquitous computing and “big data” have been widely recognized as requiring new concepts of privacy and new mechanisms to protect it. While improved concepts of privacy have been suggested, the paper aims to argue that people acting in full conformity to those privacy norms still can infringe the privacy of others in the context of ubiquitous computing and “big data”. Design/methodology/approach – New threats to privacy are described. Helen Nissenbaum's concept of “privacy as contextual integrity” is reviewed concerning (...) its capability to grasp these problems. The argument is based on the assumption that the technologies work, persons are fully informed and capable of deciding according to advanced privacy considerations. Findings – Big data and ubiquitous computing enable privacy threats for persons whose data are only indirectly involved and even for persons about whom no data have been collected and processed. Those new problems are intrinsic to the functionality of these new technologies and need to be addressed on a social and political level. Furthermore, a concept of data minimization in terms of the quality of the data is proposed. Originality/value – The use of personal data as a threat to the privacy of others is established. This new perspective is used to reassess and recontextualize Helen Nissenbaum's concept of privacy. Data minimization in terms of quality of data is proposed as a new concept. (shrink)

Self-reported data are regarded by medical researchers as invalid and less reliable than data produced by experts in clinical settings, yet individuals can increasingly contribute personal information to medical research through a variety of online platforms. In this article we examine this ‘participatory turn’ in healthcare research, which claims to challenge conventional delineations of what is valid and reliable for medical practice, by using aggregated self-reported experiences from patients and ‘pre-patients’ via the internet. We focus on 23andMe, a genetic testing (...) company that collects genetic material and self-reported information about disease from its customers. Integral to this research method are relations of trust embedded in the information exchange: trust in customers’ data; trust between researchers/company and research subjects; trust in genetics; trust in the machine. We examine the performative dimension of these trust relations, drawing on Shapin and Schaffer’s discussion of how material, literary and social technologies are used in research in order to establish trust. Our scepticism of the company’s motives for building trust with the self-reporting consumer forces us to consider our own motives. How does the use of customer data for research purposes by 23andMe differ from the research practices of social scientists, especially those who also study digital traces? By interrogating the use of self-reported data in the genetic testing context, we examine our ethical responsibilities in studying the digital selves of others using internet methods. How researchers trust data, how participants trust researchers, and how technologies are trusted are all important considerations in studying the social life of digital data. (shrink)

Online social networks have rapidly become a prominent and widely used service, offering a wealth of personal and sensitive information with significant security and privacy implications. Hence, OSNs are also an important—and popular—subject for research. To perform research based on real-life evidence, however, researchers may need to access OSN data, such as texts and files uploaded by users and connections among users. This raises significant ethical problems. Currently, there are no clear ethical guidelines, and researchers may end up performing ethically (...) questionable research, sometimes even when more ethical research alternatives exist. For example, several studies have employed “fake identities” to collect data from OSNs, but fake identities may be used for attacks and are considered a security issue. Is it legitimate to use fake identities for studying OSNs or for collecting OSN data for research? We present a taxonomy of the ethical challenges facing researchers of OSNs and compare different approaches. We demonstrate how ethical considerations have been taken into account in previous studies that used fake identities. In addition, several possible approaches are offered to reduce or avoid ethical misconducts. We hope this work will stimulate the development and use of ethical practices and methods in the research of online social networks. (shrink)

Purpose This study aims to explore the complexities of methodological, ethical and emotional challenges of studying sensitive and vulnerable communities online from the perspective of simultaneously being a researcher and a research subject. The point of departure for these explorations consists of the author’s past and ongoing studies of the role and use of a closed grief support group on Facebook for bereaved parents – a community of which the author is a member. The aim is not to provide ready (...) solutions for “how to do ethics,” but rather to contribute to the collective and ongoing work initiated by the Association of Internet Researchers, among others, and to recognize the necessity of ethical pluralism, cross-cultural awareness and an interdisciplinary approach. Design/methodology/approach This is an explorative study, drawing on an ethnographic case study. The case serves as a point of departure for discussing the complexities of methodological, ethical and emotional challenges of studying sensitive and vulnerable communities online from the perspective of simultaneously being a researcher and a research subject. Findings Being a researcher and a research subject rolled into one, as it were, presents both opportunities and challenges. To conduct responsible research from both these perspectives pose high demands on the researchers’ ethical as well as emotional capacities and responsibilities. Hopes and expectancies of the community under study might put the researcher into a dilemma, ethical aspects of anonymity and informed consent might have to be reconsidered as well as emotional challenges of engaging in and with sensitive research, all of which makes for a complex balancing act. Ethics and methods are inextricably intertwined, so are the emotional challenges of conducting sensitive research intermingled. Studying vulnerable individuals and closed communities online highlights the necessity for case and context sensitive research and for flexibility, adaptivity and mindfulness of the researcher. It also highlights the importance of discussing and questioning theoretical, methodological and ethical developments for studying everyday life practices online. Originality/value The challenges encountered in this case study contribute to the experientially grounded approach to research ethics emphasized in AoIR’s ethics guidelines. This case offers an opportunity to explore and discuss complex issues arising from the researcher’s insider position in a closed group devoted to the sensitive topic of supporting bereaved parents. Further, it highlights the necessity for research to be case and context sensitive as well as for the researcher and the research design to be flexible and adaptive. Research on vulnerable communities also heightens the demands of ethical responsibility of the researcher and the research process. (shrink)

In this paper, faculty librarians at an academic institution explore the ethical dimensions of conducting research with user-generated social networking service (SNS) data. In an effort to guide librarian-researchers, this paper first offers a background discussion of privacy ethics across disciplines and then proposes a library-specific ethical framework for conducting SNS research.,By surveying the literature in other disciplines, three key considerations are identified that can inform ethical practice in the field of library science: context, expectation, and value analysis. For each (...) of these considerations, the framework is tailored to consider ethical issues, as they relate to libraries and our practice as librarian-researchers.,The unique role of the librarian-researcher demands an ethical framework specific to that practice. The findings of this paper propose such a framework.,Librarian-researchers are at a unique point in our history. In exploring SNSs as a source of data to conduct research and improve services, we become challenged by conflicting and equally cherished values of patron privacy and information access. By evaluating research according to context, expectations, and value, this framework provides an ethical path forward for research using SNS data.,As of this paper’s publication, there is no existing ethical framework for conducting SNS research in libraries. The proposed framework is informed both by library values and by broader research values, and therefore provides unique guidelines for the librarian-researcher. (shrink)

This paper examines the consequences of a culture of “personal ethics” when using new methodologies, such as the use of social media sites as a source of data for research. Using SM research as an example, this paper explores the practices of a number of actors and researchers within the “Ethics Ecosystem” which as a network governs ethically responsible research behaviour. In the case of SM research, the ethical use of this data is currently in dispute, as even though it (...) is seemingly publically available, concerns relating to privacy, vulnerability, potential harm and consent blur the lines of responsible ethical research behaviour. The findings point to the dominance of a personal, bottom-up, researcher-led, ‘ethical barometer’ for making decisions regarding the permissibility of using SM data. We show that the use of different barometers by different researchers can lead to wide disparities in ethical practice - disparities which are compounded by the lack of firm guidelines for responsible practice of SM research. This has widespread consequences on the development of shared norms and understandings at all levels, and by all actors within the Ethics Ecosystem, and risks inconsistencies in their approaches to ethical decision-making. This paper argues that this governance of ethical behaviour by individual researchers perpetuates a negative cycle of academic practice that is dependent on subjective judgements by researchers themselves, rather than governed by more formalised academic institutions such as the research ethics committee and funding council guidelines. (shrink)

This article examines ethical concerns surrounding research on minority issues. Specifically, it addresses whether researchers have an obligation to consider the impact that minority research can have on vulnerable populations and their own backgrounds before conducting or assessing minority research for publication. The article argues for such an obligation mainly from a consequentialist perspective and then explores possible strategies for assessing and meeting that obligation. Finally, it explores the possible negative secondary effects of those strategies and censorship concerns.

Although there is much discussion in scientific and law journals regarding direct-to-consumer genetic testing (DTCGT), there is a paucity of philosophical-ethical examination of how such services threaten to repeat the essentialist, racial-projects of the past. On the one hand, testing for ancestry can be cathartic: for those lacking familial history as to when and how they came to be where they are, DTCGT can offer powerful access to their lineage and identity-formation. On the other hand, DTCGT inevitably reinscribes problematic epistemologies (...) of race—even when the companies claim that their tests can be tools to combat white supremacy. Tracing the roots of biological essentialism back to Aristotle, through the invention of raza as cocreator of modernity, and up to critical race theories today, provides a strong foundation to examine the nascent race-thinking underlying DTCGT. Borrowing heavily from Paul Taylor and Charles Mills, but also enlisting scholars from other disciplines, such as Ifeoma Ajunwa (law), Alondra Nelson (sociology), and Troy Duster (genetics), provides the broad scope necessary for thoughtful, agile engagement of that which is ameliorative, unethical, and even dangerous—for all of us—in the age of 23andMe. (shrink)

During the 2020 COVID-19 pandemic, open science has become central to experimental, public health, and clinical responses across the globe. Open science is described as an open commons, in which a right to science renders all possible scientific data for everyone to access and use. In this common space, capitalist platforms now provide many essential services and are taking the lead in public health activities. These neoliberal businesses, however, have a problematic role in the capture of public goods. This paper (...) argues that the open commons is a community of rights, consisting of people and institutions whose interests mutually support the public good. If OS is a cornerstone of public health, then reaffirming the public good is its overriding purpose, and unethical platforms ought to be excluded from the commons and its benefits. (shrink)

Digital epidemiology, also referred to as digital disease detection, successfully provided methods and strategies for using information technology to support infectious disease monitoring and surveillance or understand attitudes and concerns about infectious diseases. However, Internet-based research and social media usage in epidemiology and healthcare pose new technical, functional and formal challenges. The focus of this paper is on the ethical issues to be considered when integrating digital epidemiology with existing practices. Taking existing ethical guidelines and the results from the EU (...) project M-Eco and SORMAS as starting point, we develop an ethical assessment model aiming at providing support in identifying relevant ethical concerns in future DDD projects. The assessment model has four dimensions: user, application area, data source and methodology. The model supports in becoming aware, identifying and describing the ethical dimensions of DDD technology or use case and in identifying the ethical issues on the technology use from different perspectives. It can be applied in an interdisciplinary meeting to collect different viewpoints on a DDD system even before the implementation starts and aims at triggering discussions and finding solutions for risks that might not be acceptable even in the development phase. From the answers, ethical issues concerning confidence, privacy, data and patient security or justice may be judged and weighted. (shrink)

The growing significance of social media in research demands new ethical standards and practices. Although a substantial body of literature on social media ethics exists, studies on the ethics of conducting research using social media are scarce. The emergence of new evidence sources, like social media, requires innovative methods and renewed consideration of research ethics. Therefore, we pose the following question: What are the defining characteristics of ethics papers on social media research? Following a modified version of the Preferred Reporting (...) Items for Systematic Reviews and Meta-Analyses (PRISMA) protocol, we analyzed 34 publications based on ten variables: author gender, publication year, region, academic discipline, type, design, methodology, social media platform in focus, positionality statement, and ethical issues. Our findings suggest contemporary social media research ethics primarily reflects the ethical ideals of the Global North, with limited representation from the Global South. Women authors have published more papers than men authors. Previous studies have prioritized ethical concerns such as privacy, informed consent, and anonymity while overlooking researchers’ risks and the ethics of social media sites. We particularly emphasized the lack of researchers’ positionality statements in research. Our findings will pave the way to understanding social media ethics better, especially with the rapid growth of social media research in global scholarship. (shrink)

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)

Purpose – The purpose of this paper is to develop a novel approach for the ethical analysis of data collected from an online file-sharing site known as The PirateBay. Since the creation of Napster back in the late 1990s for the sharing and distribution of MP3 files across the Internet, the entertainment industry has struggled to deal with the regulation of information sharing at large. Added to the ethical questions of censorship and distributive justice are questions related to the use (...) of data collected from such file-sharing sites for research purposes. Design/methodology/approach – The approach is based on previous work analysing the use of data from online social networking sites and involves value analysis of the collection of data throughout the data’s various life cycles. Findings – This paper highlights the difficulties faced when attempting to apply a deontological or utilitarian approach to cases like the one used here. With this in mind, the authors point to a virtue ethics approach as a way to address ethical issues related to data sharing in the face of ever-changing data gathering and sharing practices. Practical implications – This work is intended to provide a concrete approach for ethical data sharing practices in the domain of Internet security research. Originality/value – The approach presented in this paper is a novel approach combining the insights from: the embedded values concept, value-sensitive design and the approach of the embedded ethicist. (shrink)

Sharing social media research datasets allows for reproducibility and peer-review, but it is very often difficult or even impossible to achieve due to legal restrictions and can also be ethically questionable. What is more, research data repositories and other research infrastructure and research support institutions are only starting to target social media researchers. In this paper, we present a practical solution to sharing social media data with the help of a social science data archive. Our aim is to contribute to (...) the effort of enhancing comparability and reproducibility in social media research by taking some first steps towards setting standards for sustainable data archiving. We present a showcase for sharing social media data with the example of a big dataset containing geotagged tweets through a research data archive. We provide a general background to the process of long-term archiving of research data. After some consideration of the current obstacles for sharing and archiving social media data, we present our solution of archiving the specific dataset of geotagged tweets at the GESIS Data Archive for the Social Sciences, a publicly funded German data archive for secure and long-term archiving of social science data. We archived and documented tweet IDs and additional information to improve reproducibility of the initial research while also attending to ethical and legal considerations, and taking into account Twitter’s terms of service in particular. (shrink)

This article discusses ethical guidelines from the viewpoint of the teachings of Islam and, although not ostensibly different, finds parallels in the manner in which ethics could be conceptualised in the context of research in education. It seeks an alignment between ethics from the perspective of being a professional engaged in educational research with a personal significance based on one’s belief, which takes a holistic notion of life. The aims of being ethical researchers seem to be shared in many ways: (...) protection, honesty and integrity. However, there is an added dimension of being accountable to God. The article first locates research within the wider context of Higher Education. Thereafter, to facilitate an understanding of ethics, as viewed from the framework of the Qur’ān, it proceeds to consider the ethical requirements of a university in the West Midlands, England, as a case study to examine the congruence, if any, with some of the ethical teachings of Islam. Based on the preliminary research, this article argues that Muslim researchers in education should be cognisant that their responsibilities are wider. Firstly, they are stewards meaning that the care and well-being of others comes first. Stewardship is both a Biblical and Qur’ānic concept meaning to be guardians. Secondly, by conducting their research in ethical ways, it will mean that they will be performing good deeds. These are meritorious actions rewarded by God. It also clarifies to supervisors and ethics review committees the key principles which might inform the thinking of some researchers from the Muslim community and how their motivations would be ethical. (shrink)

Research Ethics, Volume 18, Issue 2, Page 93-113, April 2022. Twitter is an increasingly common source of rich, personalized qualitative data, as millions of people daily share their thoughts on myriad topics. However, questions remain unclear concerning if and how to quote publicly available social media data ethically. In this study, focusing on 136 education manuscripts quoting 2667 Tweets, we look to investigate the ways in which Tweets are quoted, the ethical discussions forwarded and actions taken, and the extent to (...) which quoted Tweets are “discoverable.” A concerning result is that in almost all manuscripts, and for around half of all quoted Tweets, the original author could be identified. Drawing on our findings we share some ethical dilemmas, including those that arise from an apparent lack of understanding of the technical aspects of the platform, and offer suggestions for promoting ethically-informed practice. (shrink)

This paper describes how the ethical problems raised by scientific data obtained through harmful and immoral conduct may also emerge in cases where data is collected from the Internet. It describes the major arguments for and against using ill-gotten information in research, and shows how they may be applied to research that either collects information about the Internet itself or which uses data from questionable or unknown sources on the Internet. Three examples demonstrate how researchers address the ethical issues raised (...) by the sources of data that they use and how the existing arguments concerning the use of ill-gotten information apply to Internet research. The problems faced by researchers who collect or use data from the Internet are shown to be the same problems faced by researchers in other fields who may obtain or use ill-gotten information. (shrink)

This paper considers some of the ethical issues surrounding the study of malicious activity in social networks, specifically using a technique known as social honeypots combined with the use of deception. This is a potentially touchy area of study that is common to social and behavioral research that is well understood to fall within the boundaries of human subjects research that is regulated in the United States and reviewed by institutional review boards, but is not well understood by computer security (...) researchers or those in the private sector. The firestorm of controversy over the 2014 “emotional contagion” study of Facebook users shows that learning about being deceived may itself be the harm, to both those users involved and their trust in researchers and research in general. Should researchers have an obligation to try to find research methods that do not involve deception to achieve the same research results? (shrink)

The development of the web, in the last 20 years, has opened new areas of analysis and new phenomena sociologically relevant for social research. However, the research work in digital space presents a series of ethical and deontological problems. In this context the members of the Association of Internet Researchers have composed and edited a document with a series of ethical guidelines for social research. The work of the AOIR group not include Italian researchers; for this reason, the aim of (...) this paper is propose a commented translation of the contents of Ethical decision-making and Internet research for make the ethical factor one of the main tools for computational sociology. (shrink)