This paper challenges current dominant thinking in Universities about the processes of ethical appraisal of research studies in the Social Sciences. It considers this to be founded on unjustifiable and inappropriate principles, the origins of which are presented before discussing alternative, more inclusive and ethically defensible approaches. The latter are based on dialogic processes to sustain respectful and empowering ethical reviews which appreciate the situated nature of research. The empirical evidence for this comes from papers about ethnographic studies with children (...) and adults in various educational spaces in Western Europe, originally a symposium on the practice of ethics in educational ethnography at ECER, 2017, now forming a book published by Routledge, 2019. The dialogic processes help researchers to carry out culturally-appropriate research with the demonstrable ethical integrity that participants and stakeholders reasonably expect. The authors argue that currently risk-averse Universities need to change their research cultures to support all research methodologies and fieldwork practices that have ethical integrity and create valuable research that is socially beneficial, to enhance their lustre. (shrink)

Environmental, health, and safety management systems have become common in research settings to improve laboratory safety through systematic observation and self-regulation. However, there is scant empirical evidence assessing whether these surveillance and inspection systems meet their intended objectives. Using data from safety inspections in research laboratories at a large university, we investigate whether conducting inspections, and recording and reporting findings back to the formally responsible actors (i.e., principal investigator scientists) lead to the improvement of regulatory compliance. Our analyses identify a (...) population of well-funded, high-status, tenured researchers whose non-compliant practices persist. Our interviews with environmental, health, and safety personnel suggest that higher-status actors disengage from the regulatory system, the compliance officers, and the system’s feedback process by their variable recognition and acknowledgment of relevant regulations, attention to the inspection reports, and responses to the feedback concerning repair of the unsafe situation. This study extends previous literature on regulatory compliance by providing evidence for the role of power and status in explaining actor-level non-compliant behavior. (shrink)

Though rapid collection of big data is ubiquitous across domains, from industry settings to academic contexts, the ethics of big data collection and research are contested. A nexus of data ethics issues is the concept of creep, or repurposing of data for other applications or research beyond the conditions of original collection. Data creep has proven controversial and has prompted concerns about the scope of ethical oversight. Institutional review boards offer little guidance regarding big data, and problematic research can still (...) meet ethical standards. While ethics seem concrete through institutional deployment, I frame ethics as produced. Informed by my ethnographic research at a large public university in the U.S., I explore ethics through two models: ethics as institutional procedures and ethics as acts and intentions. The university where I conducted fieldwork is the development grounds for a predictive model that uses student data to anticipate academic success. While students consent to data collection, the circumstances of consent and the degree to which they are informed are not so apparent, as many data are a product of creep. Drawing from interviews and participant observation with administrators, data scientists, developers, and students, I examine data ethics, from a larger institutional model to everyday enactments related to data creep. After demonstrating the limits of such models, I propose a remodeling of ethics that draws on recent works on data, justice, and refusal to pose generative questions for rethinking ethics in institutional contexts. (shrink)

Institutional Review Boards and their federal overseers protect human subjects, but this vital work is often dysfunctional despite their conscientious efforts. A cardinal, but unrecognized, explanation is that IRBs are performing a specific function – the management of risk – using a flawed theoretical and practical approach. At the time of the IRB system’s creation, risk management theory emphasized the suppression of risk. Since then, scholars of governance, studying the experience of business and government, have learned that we must distinguish (...) pure from opportunity risks. Pure risks should be suppressed. Some opportunity risks, in contrast, must be accepted if the institution is to meet its goals. Contemporary theory shows how institutions may make these decisions wisely. It also shows how a sound organizational understanding of risk, a proper locus of responsibility, and appropriate institutional oversight all contribute to effective risk management. We can apply this general theory, developed in other contexts, to the problems of the IRB system. Doing so provides a unifying explanation for IRBs’ disparate dysfunctions by spotlighting five related deficiencies in IRB theory and structure. These deficiencies are inability to focus on greater risks, loss of balanced theory, inaccessibility to guidance from senior leadership, unbalanced federal oversight, and inflexibility. These flaws are deeply rooted in the system, and superficial reform cannot resolve them. Congress should overhaul the system to meet contemporary standards of risk management; this would benefit subjects, scientists, and the public that needs the fruits of research. (shrink)

Laura Stark’s ethnography of IRB decision-making unearthed two concerns: first, even though the committees were governed by ethical principles, the committees generated their own precedents for future decision-making; second, Stark witnessed unequal power relations within committee decision-making as a member’s expertise was accepted as a ‘warrant’. This article examines how these warrants are practiced within the decision-making process of New Zealand’s four Health and Disability Ethics Committees. More specifically, this article concerns these warrants during a committee’s decision to consult with (...) indigenous communities, a decision for which there exist no guidelines. The article ends by discussing ethical issues when observing in public places. (shrink)

A previous research ethics article by the authors provided evidence to support the claim that the New Zealand Ethics Committee was a powerless ethics committee. Ethics review applicants were not formally obliged to seek ethics review, and any committee recommendations were given on a ‘take it or leave it’ basis. One year later, the capacity of applications has doubled, and NZEC finds its core assumptions challenged as funders and government agencies now compel contracted researchers to make use of this free (...) service. Moreover, NZEC has expanded into research areas inhabited by market researchers, long shy of ethics review. Review requirements and remit expansion challenges some, but not all, aspects of NZEC’s assumption of powerlessness as NZEC remains committed to research ethics, not research governance, and it adheres to the principles of the New Brunswick Declaration to respect applicants the same way it expects applicants to respect participants. This annual survey of applicants makes NZEC accountable to its applicants, providing evidence once more that NZEC’s expeditious and cordial review of applications is considered different from traditional ethics review. (shrink)

This article explores negotiations over the humanistic versus mechanized components of care through an ethnographic account of digital phenotyping research. I focus on a US-based team of psychiatric and engineering professionals assembling a smartphone application that they hope will analyze minute changes in the sounds of speech during phone calls to predict when a user with bipolar disorder will have a manic or depressive episode. Contrary to conventional depictions of psychiatry as essentially humanistic, the discourse surrounding digital phenotyping positions the (...) machine as a necessary addition to mental health care precisely because of its more-than-human sensory, attentional capacities. The bipolar research team likewise portrays their app as capable of pinpointing sonic signs of mental illness that humans, too distracted by semantic meaning, otherwise ignore. Nevertheless, the team members tasked with processing the team’s data must craft and perform a selectively attentive machinic subject position, which they call “listening like a computer”: a paradoxical mode of attention and inattention. By tracing the team’s discursive and on-the-ground enactments of care and attention as both humanistic and machinic, I tune a critical ear to the posthuman promises of digital phenotyping. (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)

The Hoffman Report scandal demonstrates that ethics is not objective and ahistorical, contradicting the comforting progressive story about ethics many students receive. This modern-day ethical failure illustrates some of the weaknesses of the current ethics code: it is rule-based, emphasizes punishments for noncompliance, and assumes a rational actor who can make tricky ethical decisions using a cost–benefit analysis. This rational emphasis translates into pedagogy: the cure for unethical behavior is more education. Yet such an approach seems unlikely to foster ethical (...) behavior in the real world, either for students or for mature scientists. This article argues for an alternative ethical system and a different way of teaching ethical behavior. Virtue ethics emphasizes the development of ethical habits and traits through regular practice and reflection. We show how virtue ethics complements a feminist approach to science, in which scientists are encouraged to reflect on their own biases, rather than attempting to achieve an impossible objectivity. Our article concludes with pedagogical suggestions for teaching ethical behavior as a practical and intelligent skill. (shrink)

Many in the international development community have embraced the randomized controlled field experiment, akin to a biomedical clinical trial for social interventions, as the new “gold evidential standard” in program impact evaluation. In response, critics have called upon the method’s advocates to consider the moral dimensions of randomization, leading to a debate about the method’s ethics. My research intervenes in this debate by empirically investigating how researchers manage the perception of randomization in the field. Without the possibility of a placebo, (...) researchers rhetorically and materially frame the experiment differently for the control and treatment groups. Three technologies allow for this differential framing: geographic separation, temporal delay, and public randomization ceremonies. Geographic separation is a “technology of opacity” designed to obscure unequal resource distribution by disentangling the intervention and research components of the experiment for the control group. The latter two are technologies of transparency designed to expose the element of randomization but downplay conditions that may affect participant buy in. All three technologies work to preclude collective definitions of fair resource allocation, yet they are not fully successful in preventing modes of confrontation and resistance that lie outside of the experiment’s framing. (shrink)

As biomedical research with volunteers was expanded in the United States, the rule of subject selection, constituting scientific and ethical criteria, was generated in 1981 to resolve selection bias in research. Few historical studies, however, have investigated the role of this new hybrid rule in institutional review systems. This paper describes how bioethics commissions and federal agencies have created the subject selection rule based on the concept of justice. I argue that the standardization of this rule as temporal measures, linked (...) with risk-benefit assessment, has reformed the review mechanism, specifically investigators’ modification of research plans, thereby developing justice as balancing. (shrink)

In recent years, scholars in science and technology studies have examined the advice that experts make for the governance of biomedicine. This STS scholarship, however, has not yet explained how the credibility of ethics expertise in public bioethics is produced from particular conditions and extended to different settings. This article describes how a bioethics commission created the ethical principle of justice and examines how the ethics expertise established public credibility on the justice principle. The findings suggest that the principle of (...) justice was first explored as the diverse concepts of “equality” with reference to the review of fetal research, redefined as “fairness” or “desert” from theoretical viewpoints, and then circulated as a standard framework in local settings. The credibility of ethics expertise, based on the coproduction of material and moral orders, was made possible by reaching common ground among different data, principles, and background theories. (shrink)

Social experimental research commonly employs media to elicit responses from research subjects. This use of media is broadly protected under fair use exemptions to copyright, and creators of content used in experiments are generally not afforded any formal consideration or protections in existing research ethics frameworks. Online social networking sites are an emerging and important setting for social experiments, and in this context the material used to elicit responses is often content produced by other users. This article argues that users (...) may have a reasonable interest in controlling the use of their content in experiments conducted in online social networks. Matters of risk and autonomy in research ethics are explored by analogy to active debates in law over adhesion contracts, moral rights, and the right to be forgotten. The article concludes by considering practical difficulties in identifying and protecting the interests of creators. (shrink)

This study examines a significant gap in the role of providing ethical guidance and support for community-based research. University and health-based ethical review committees in New Zealand predominantly serve as ‘gatekeepers’ that consider the ethical implications of a research design in order to protect participants and the institution from harm. However, in New Zealand, community-based researchers routinely do not have access to this level of support or review. A relatively new group, the New Zealand Ethics Committee, formed in 2012, responds (...) to the uneven landscape of access for community-based research. By offering ethical approval inclusive of the review of a project’s study design outside institutional settings, NZEC has endeavoured to move beyond a gatekeeping research governance function to that of bridge-building. This change of focus presents rich possibilities but also a number of limitations for providing ethical review outside conventional institutional contexts. This paper reports on the NZEC’s experience of working with community researchers to ascertain the possibilities and tensions of shifting ethics review processes from research governance to a focus on research ethics in community-based participatory research. (shrink)

Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. (...) First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing. (shrink)

‘Vulnerability’ is a key concept used to understand the ethical implications of conducting refugee-focused research. This case study illustrates the need to follow Luna’s call for a shift fr...

Since the 1988 Cartwright Inquiry, lay members of ethics committees have been tasked with ensuring that ordinary New Zealanders are not forgotten in ethical deliberations. Unlike Institutional Review Boards in North America, where lay members constitute a fraction of ethics committee membership, 50% of most New Zealand ethics committees are comprised of lay members. Lay roles are usually defined in very broad terms, which can vary considerably from committee to committee. This research queries who lay representatives are, what they do, (...) and what if anything they represent. Our findings are based on data collection with 12 participants: eight semi-structured interviews with lay members from diverse types of ethics committees who described their roles, and commentary from four ethics committee chairs, three of these lay members who commented on this article’s final draft. Findings indicate that the role of New Zealand lay persons – although distinctively valued – is otherwise similar to the documented role of lay persons within North American ethics committees. Lay members see their role as primarily protecting the research participant and at times offering a corrective to non-lay members’ views and the interests of their institutions. However, in spite of their numbers, most lay members do not see themselves as representing any particular constituent groups or institutionally unaffiliated areas of concern. On tertiary education committees especially, there is a good deal of ambiguity in the lay role. (shrink)

Feminist science studies scholars have documented the historical and cultural contingency of scientific knowledge production. It follows that political and social activism has impacted the practice of science today; however, little has been done to examine the current cultures of science in light of feminist critiques and activism. In this article, I argue that, although critiques have changed the cultures of science both directly and indirectly, fundamental epistemological questions have largely been ignored and neutralized through these policy reforms. I provide (...) an auto-ethnography of my doctoral work in a neuroscience program to a) demonstrate how the culture of science has incorporated critiques into its practices and b) identify how we might use these changes in scientific practices to advance feminist science agendas. I critically analyze three areas in current scientific practice in which I see obstacles and opportunities: 1) research ethics, 2) diversity of research subjects and scientists, and 3) identification of a project's significance for funding. I argue that an understanding of the complicated and changing cultures of science is necessary for future feminist interventions into the sciences that directly challenge science's claim to epistemic authority. (shrink)

This essay responds to an article, ‘Variation in university research ethics review’, published in this issue. It argues that the authors of that paper do not fully distinguish the usual function of university research ethics committees from that of a gatekeeper. The latter term more accurately describes the task they happen to have asked them to fulfil in the course of conducting some empirical research. Whilst they are not alone in making it, the result of this conflation is that the (...) reflections they offer are misguided. In this short comment I briefly discuss the distinction between a REC and a gatekeeper, and indicate how it impacts on the proposals sketched by Vadeboncoeur et al. (shrink)

Life sciences research is increasingly international and data-intensive. Researchers work in multi-jurisdictional teams or formally established research consortia to exchange data and conduct research using computation of multiple sources and volumes of data at multiple sites and through multiple pathways. Despite the internationalization and data intensification of research, the same ethics review process as applies to single-site studies in one country tends to apply to multi-site studies in multiple countries. Because of the standard requirement for multi-jurisdictional or multi-site ethics review, (...) international research projects are subjected to multiple ethics reviews of the same research protocol. Consequently, the reviews may be redundant and resource-consuming, whilst the opinions delivered by ethics committees may be inconsistent both within and across jurisdictions. In this article, we present findings based on interviews conducted with international experts in research ethics on the topic of et... (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)

A recent systematic review of Machine Learning (ML) approaches to health data, containing over 100 studies, found that the most investigated problem was mental health (Yin et al., 2019). Relatedly, recent estimates suggest that between 165,000 and 325,000 health and wellness apps are now commercially available, with over 10,000 of those designed specifically for mental health (Carlo et al., 2019). In light of these trends, the present chapter has three aims: (1) provide an informative overview of some of the recent (...) work taking place at the intersection of text mining and mental health so that we can (2) highlight and analyze several pressing ethical issues that are arising in this rapidly growing field and (3) suggest productive directions for how these issues might be better addressed within future interdisciplinary work to ensure the responsible development of text mining approaches in psychology generally, and in mental health fields, specifically. In Section 1, we review some of the recent literature on text-mining and mental health in the contexts of traditional experimental settings, social media, and research involving electronic health records. Then, in Section 2, we introduce and discuss ethical concerns that arise before, during, and after research is conducted. Finally, in Section 3, we offer several suggestions about how ethical oversight of text-mining research might be improved to be more responsive to the concerns mapped out in Section 2. (shrink)