Moments of Uncertainty: Ethical Considerations and Emerging Contaminants

Science on emerging environmental health threats involves numerous ethical concerns related to scientific uncertainty about conducting, interpreting, communicating, and acting upon research findings, but the connections between ethical decision making and scientific uncertainty are under‐studied in sociology. Under conditions of scientific uncertainty, researcher conduct is not fully prescribed by formal ethical codes of conduct, increasing the importance of ethical reflection by researchers, conflicts over research conduct, and reliance on informal ethical standards. This article draws on in‐depth interviews with scientists, regulators, activists, industry representatives, and fire safety experts to explore ethical considerations of moments of uncertainty using a case study of flame retardants, chemicals widely used in consumer products with potential negative health and environmental impacts. We focus on the uncertainty that arises in measuring people's exposure to these chemicals through testing of their personal environments or bodies. We identify four sources of ethical concerns relevant to scientific uncertainty: 1) choosing research questions or methods, 2) interpreting scientific results, 3) communicating results to multiple publics, and 4) applying results for policy making. This research offers lessons about professional conduct under conditions of uncertainty, ethical research practice, democratization of scientific knowledge, and science's impact on policy.     

Sensitive topics in social research involving children

While there is broad consensus that involving children in research is critically important for understanding their lives, there is considerable caution around their participation in social research on ‘sensitive’ issues. Such caution is further amplified by a lack of agreement about what constitutes a ‘sensitive topic’. This article draws on data from interviews with a range of Australian stakeholders, including children, parents, researchers, ethics committee members, government and non-government organisation representatives, and other decision-makers, specifically related to the question of ‘what is a sensitive topic?’. While participants identified a range of sensitive topics, findings point to sensitivities being closely linked with the contexts of children’s lives and experiences. This requires researchers to approach research in ways that reflect more nuanced understandings of these sensitivities, help address potential concerns and facilitate the development of research relationships that promote ethical conduct of research with children.     

Informed Consent as Process: Problematizing Informed Consent in Organizational Ethnographies

This article examines the implications of informed consent in organizational ethnographies, where the research site is a bounded and formal institution that has its own sets of rules which govern action and membership. While there is considerable scholarship on the issue of ethics in ethnography in general, very little has been written about informed consent in organizational ethnographies where researchers often simultaneously observe managers, “studying” up according to Nadar, and employees referred to as “studying down”. Organizational researchers tend to discuss ethics in terms of obtaining informed consent for individual interviews or in terms of access to an organization as a research site. This essay examines ethical dilemmas experienced in fieldwork studying participatory work arrangements in a Mexican garment firm. By discussing practical issues of gaining access, problems of maintaining access and consent, and concerns of how gatekeeper consent affects subordinates, I problematize the practice of obtaining informed consent in organizations. I argue that thinking of informed consent as an on-going process that requires an active reflexivity on the part of the ethnographer will help researchers to navigate the ever-shifting web of power dynamics present in organizations.     

Building stronger weak ties among a diverse pool of emergent nonprofit leaders of color

This article explores theoretical underpinnings of social capital and strong and weak ties as they relate to relationships within, between, and among six cohorts of promising nonprofit leaders of color in a northwestern U.S. city. Using mixed methods, including network analyses, it considers the impact and potential of a university‐community collaboration to deliver a program to promising emergent leaders nominated for their talent and commitment to the work of their community‐based organizations, often in competition for limited resources. The article considers the program's implicit effect on relationships and reveals intersector connections among alumni. Findings show substantial alumni movement among organizations, increasing the potential for collaboration and mentoring relationships. We conclude with recommendations for programs seeking long‐term impact and discuss a series of unanticipated findings and the questions they engender, many critical as communities and organizations become more diverse and social needs do not diminish.     

Re-evaluating standards of human subjects protection for sensitive health data in social media networks

This study addresses ethical questions about conducting health science research using network data from social media platforms. We provide examples of ethically problematic areas related to participant consent, expectation of privacy, and social media networks. Further, to illustrate how researchers can maintain ethical integrity while leveraging social media networks, we describe a study that demonstrates the ability to use social media to identify individuals affected by cancer. We discuss best practices and ethical guidelines for studying social media network data, including data collection, analysis, and reporting.     

Whose results are these anyway? Reciprocity and the ethics of “giving back” after social network research

Bridging the social networks, field methods and ethics literatures, I make the case that the process of reporting research findings is an ethical issue, and recommend elevating it in the research design. I draw on a reflective account of three research experiences with settings in, respectively, online health communities, economic organizations, and the mainstream media. I proceed in steps, discussing release of personal network results to individual participants, of whole network results to the researched community, and finally of general results to wider audiences, under a unifying idea that a reciprocity obligation underlies the reporting process. I claim that communication should follow an iterative rather than a linear approach to reach all relevant stakeholders, thereby mitigating the vulnerabilities that arise from research.     

Public Scholarship and Community Engagement in Building Community Food Security: The Case of the University of Kentucky

The current call for public scholarship and community engagement by universities and disciplinary organizations has created opportunities to develop innovative ways to integrate research, instruction, and outreach. This article discusses a collaboration among scholars at the University of Kentucky and alternative agrifood movement organizations that has evolved as they pursue an alternative agrifood system in Kentucky. This collaboration made instructional programs in sociology and the honors world food issues track places in which both students and instructors can examine “problems” of the conventional agrifood system, conduct research, and develop collaborative relationships with community activists. We draw on Burawoy's discussion of public sociology and its interface with professional, critical, and policy sociologies. Supplementing our discussion with literature from social movements and science studies, we demonstrate how this integrated approach can render sociological knowledge and skills useful as critical support of alternative agrifood movements. We argue that the “experiential classroom” is an excellent site for the critical examination within the agrifood movements of oppositional culture. This, in turn, makes possible students' recognition of injustice in the existing agrifood system.     

Humanitarian Interorganizational Information Exchange Network: How Do Clique Structures Impact Network Effectiveness?

Humanitarian information coordination and sharing continue to challenge the international community. Interorganizational networks are believed to be a way to improve coordination and collaboration among humanitarian organizations. Although researchers have devoted a considerable amount of time exploring the influence of network structure on network performance and effectiveness, little work has been done in the humanitarian relief field. We use the theoretical lens of social network to investigate the relationship between network cliques and network effectiveness. Data were collected through multiple sources among members of GlobalSympoNet, a community of humanitarian organizations engaged in humanitarian information management and exchange. Our findings suggest that, similar to the public health service delivery sector, network effectiveness can be explained by network integration and network cliques in the humanitarian relief field. We discuss these findings and provide some implications of our research in designing interorganizational networks within the humanitarian relief field.     

Moral bureaucracies and social network research

In the wake of Europe’s General Data Protection Regulation (GDPR), research ethics governance does not just affect the ethical dimensions of social research but also the range of scientific decisions available to researchers. Because of the sensitive status of personal data and the aversion to even minimal risk by what we call “moral bureaucracies”, we are concerned that social network researchers will increasingly limit their research decisions to “safe” options, like reusing anonymized datasets, choosing target populations based on convenience rather than theoretical relevance, and routinely subcontracting fieldwork to professional data collection companies, among others. We also suggest that scientific associations and social scientists in general need to adopt a proactive role in preserving both scientific freedom and genuine ethics advice within this new regulatory framework.     

Developing social robots for aging populations: A literature review of recent academic sources

The perception of aging populations is a major factor driving the social robot development movement. A growing body of research reflects the expanding interest in social robots. This paper synthesizes research on the development of social robots with a literature review of academic articles with publication dates ranging from 2006 to 2017. The review is divided into three themes: (a) robots as an aid in treatment; (b) robots as social assistants and home companions; and (c) robots as custodial caregivers that are viewed in terms of ethical implications. This paper outlines the issues surrounding social, commitment, assistive, and companion robots for use in medical treatment, mental health therapy, physiotherapy, care facilities, and private homes. It describes some of the ethical concerns raised by researchers and media, including questions of control, privacy, consent, and the issue of simulated versus human compassion in caregiving. The research also points out that a rhetoric of urgency concerning aging populations drives the development of robots, which frames citizens who will benefit from robots in reductive ways. We argue that the contribution of humanities and social science research, including age studies and critical gerontology, should be better integrated with discourses of social robot development, largely from technical fields.     

Ethics and defense agency funding: some considerations

The author, an anthropologist working in a military defense science and technology funding agency, offers four guidelines for social scientists for evaluating the ethical problems in defense funding opportunities. These guidelines address what social scientists need to know in order to evaluate the ethical risks involved in accepting defense funding: (1) the need to understand the code of ethics of social science organizations and their limits in dealing with ethical problems of new technologies; (2) the need to understand the implications of working in “classified” contexts; (3) the need to understand the funding program's goals and objectives; (4) the need to develop an ethical imagination about technological advances and research and develop an appropriately supportive environment for promoting ethical behavior in the scientific community.     

Conducting Research with Lesbian,Gay, and Bisexual Populations: Navigating Research Ethics Board Reviews

The acceleration of research with lesbian, gay, and bisexual (LGB) populations amid existing sexual prejudice and advancing human rights leads to sometime conflicting stances between researchers and ethics boards over acceptable methodological practices. Ethics boards, charged with ensuring the safety of research participants, may engage in ostensibly protective stances regarding potential risks and informed consent that are unwittingly founded upon negative stereotypes of LGB populations. We examine four case studies that demonstrate divergent stances between researchers and ethics boards, researchers’ responses to ethics reviews and their resolution. Based on these cases, we describe themes and strategies for researchers working with LGB populations in responsibly navigating ethics board concerns.     

Decentering Power in Research with Criminalized Women: A Case for Photo-Elicitation Interviewing

ABSTRACT

This article contributes to the project of developing a visual criminology that reclaims social relationships and the humanity and visibility of criminalized people and strives to disrupt the ideological and political underpinnings of mass incarceration and the state’s reliance on punitive responses to social inequality. Using photo-elicitation interviewing (PEI), I draw on qualitative research with 36 formerly incarcerated women living in Chicago. I review PEI’s potential to disrupt the power differential between researchers and participants and to include research participants as collaborators in knowledge production. I examine how limitations imposed by an Institutional Review Board created ethical concerns about representing women’s images and constrained women’s role in the coproduction of knowledge. I argue that PEI based on participant-generated images can help to overcome some of the ethical and methodological tensions encountered in visual criminology.     

Navigating the ethical maze in disability research: ethical contestations in an African context

Despite changes in how disability is viewed, ethical requirements for disability research have hardly changed. Some ethical clearance procedures, processes and practices still consider persons with disabilities as not able, creating unease among researchers and research participants with disabilities themselves. This paper considers five ethical contestations arising from research in the area of disability in an African context: positionality, vulnerability, signed consent, anonymity, and research committee composition. We argue that ethical requirements in practice are still largely based on a medical model of disability and propose that culturally sensitive social and human rights models should influence disability research ethics.     

Ethical challenges in conducting research with hard to reach families

This paper reflects on some of the ethical challenges encountered by the authors whilst undertaking sensitive qualitative research with parents and children who are traditionally hard to reach. The research aimed to provide more holistic and in‐depth accounts of parenting on a low income in diverse social circumstances than already exist. The nature of the sample and the subject matter that was covered inevitably raised many familiar ethical dilemmas and some that are less often encountered in practice, particularly in relation to child protection. In this article we discuss our approach to ethics, some of the ethical challenges we encountered undertaking work with families and discuss the complexity of decision‐making around risk of harm to children. We conclude that a clear framework to avoid harm should be developed at the outset and a transparent approach to child protection issues should be used. Additional time and resources need to be incorporated at the planning stage of similar projects in order to develop appropriate methods, ensure effective decision‐making and support researchers. Copyright © 2008 John Wiley & Sons, Ltd.     

Rethinking Activism and Expertise within Environmental Health Conflicts

This review presents the contributions of research on the intersection of science and social movements, its theoretical and methodological limitations, and potential solutions for its further development. Three different types of relationships between activism and knowledge have been identified within environmental health conflicts: (i) lay – activists requesting help from sympathetic scientists in order to conduct independent studies; (ii) expert – activists promoting new research agendas and sub‐fields within established scientific disciplines; and (iii) expert – activists acting beyond the limits of the academic community and partnering with social movements. In this review, I argue that much of the existing literature considers expertise as “something” possessed by individuals, and heavily emphasizes the difference between “lay” and “expert” activists. This entails two main theoretical reductionisms: (i) reification of knowledge; and (ii) overlooking the contribution of activism to expertise and vice versa. I propose considering expertise as the property of a network and focusing future research within environmental health conflicts on the co‐emergence and construction of a network of expertise (Eyal 2013) or ethno‐epistemic assemblage (Irwin & Michael 2003) and social movements. Through this symmetrical network approach, we will be able to develop a more consistent theory of the co‐production of activism and expertise, as well as its political implication to fight environmental health injustice.     

Human research ethics committees and ethical review: The changing research culture for social workers

Social workers have a long-standing concern with developing codes of ethics, which govern and protect those involved in practice and research scenarios. As more social workers engage in research, successfully negotiating the ethical review process becomes imperative. In Australia, the task of ensuring ethical compliance of research protocols resides with human research ethics committees (HREC) mandated under the National Health and Medical Research Council. However, given the scope for discretion exercised by HREC, this process can be intimidating to novice and experienced researchers. The review process needs to be understood in the context of Australian ethics policy, the roles and responsibilities, and cultures of HREC. This paper outlines practical strategies in preparing ethics protocols to increase the likelihood of successful review. To do this, social workers need to recognise the way policy, legal developments and risk management strategies influence the ethical review process.     

Taxonomic Chaos in the Confused Canadian Bioethics Industry: Apres Moi la Deluge

Abstract

This paper presents a conceptual analysis of a decade-old movement in Canada to purportedly raise ethical standards in research with human subjects, even though no systematic evidence has ever been presented either that there are serious ethical problems (especially in psychological research), or that the solutions imposed by the movement would improve the ethical situation, and not harm research's fundamental epistemological enterprise. The movement began with the activities of a committee from Canada's three major government research councils, the Tri-Council Committee (TCC). Like all ideological enterprises, it provided taxonomic chaos by, for example, confusing ethics with epistemology and feelings of discomfort concerning an area of investigation with intellectual expertise about that area. It also went beyond its American counterparts by calling its proposals a code of conduct rather than guidelines, and proposing that if a so-called research participant (i.e., a subject) did not like the investigator's hypotheses, she or he could withdraw “her” or “his” data. Even after the TCC and its various bureaucratic progeny retreated (though ambiguously) from these absurd positions, there has been a maintenance of such positions as the right and responsibility of IRBs to advise not only on the ethical issue of the treatment of subjects, but also on epistemological issues of research design. These issues require not only expertise in the requisite disciplines, but also an intimate familiarity with highly specialized sub-areas. In practical terms senior researchers may be able deal with the burgeoning North American bioethics industry and ignore the anti-epistemological and implicit principles according to which the industry operates. Younger researchers, who have no memory of how research used to be conducted, will succumb, and, in an epistemological sense, be “corrupted”. As the last phrase of my title suggests, senior researchers are currently acting like France's Louis XV.     

Dual Relationships in Social Work Education

Dual relationships between social work educators and their current or former students is largely unstudied. This article reports on a survey of deans and senior social work educators’ ethical beliefs on dual relationships. Educators were asked how they regarded different types of dual relationships and differences between dual relationships with current and former students. They were also asked about ethics education in their schools. Beliefs about dual relationships varied, especially regarding current students and former ones. While ethics education in schools of social work is extensive, policies on dual relationships are scarce. Further research is needed on the ethics of dual relationships in social work education.     

Perspectives on scientific inquiry: Ethics in the conduct of rehabilitation research

The article examines ethical considerations related to the design and implementation of rehabilitation research. The authors' primary thesis is that ethical research practice requires rehabilitation and disability studies scholars to (a) adhere to the standards of conduct promulgated in the canons of ethics of such organizations as the American Psychological Association, the American Counseling Association, and the American Rehabilitation Counseling Association in all interactions with people with disabilities and (b) maintain vigilance in protecting the rights and safety of participants in specific investigations.