Risks and wrongs in social science research. An evaluator's guide to the IRB

Having an Institutional Review Board (IRB) review and monitor the use of human subjects is now fundamental to ethical research. Yet social scientists appear increasingly frustrated with the process. This article aims to assist evaluators struggling to understand and work with IRBs. The author theorizes why IRBs frustrate and insists there is only one remedy: We must accept the legitimacy of IRB review and (a) learn more about IRB regulations, imperatives, and the new pressures on them; and (b) educate IRBs about social scientific methodologies and empirically demonstrable risks. A research agenda and tips are offered.     

Social network research and human subjects protection: Towards more effective infectious disease control

The issue of human subject protection in relation to social network research on the spread and control of human pathogens is considered. As this area derives most of its concepts and methods from social network analysis more generally, the present discussion has wider relevance. One problem is that some Institutional Review Boards (IRBs) have assumed that if a participant (who gave informed consent) is to be asked to name network associates these too — automatically — would be human subjects from whom informed consent also must be obtained. Invariably, if this occurs proposed research — whatever its funding and potential contributions might be — is blocked. A conservative approach is taken here. The Common Rule is assumed to provide relevant guidance, the responsibility of IRBs is to make decisions based on the Common Rule, and in consequence the burden is on those proposing social network research to design — and defend — their planned work with this in mind. At the same time, it is argued that it is important not to stifle beneficial research by adding to one inherently conservative review process (of grant proposals) another (of IRBs) so that work is prevented simply because it is research at the frontiers rather than ‘safe’ research.     

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.     

Who benefits from network analysis: ethics of social network research

The success of social network research (SNR) has led to expectations that in addition to academic research, SNR can introduce people to one another, solve organizational problems, map the epidemiology of AIDS, and catch criminals and terrorists. Since SNR requires that names of both respondents and their contacts be collected and used in most analyses, Institutional Review Boards become very concerned. Experiences of the author, participants in the 2003 Sun Belt Conference and the Social Network List Serve illustrate ethical issues. Proper handling of the data and the analysis, including complete control by the investigator can virtually eliminate harm to respondents and those they nominate, though perhaps not to the satisfaction of IRBs. On the benefit side, academic researchers always benefit, organizations, society and science may benefit, but individual respondents rarely do.     

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.     

Autonomy and Compliance: How Qualitative Sociologists Respond to Institutional Ethical Oversight

Prevailing sociological understandings of institutional ethical review tend to homogenize faculty responses to them, and are predominantly speculative. In this research, we conduct interviews with sociologists from 21 Ph.D.-granting departments across Canada, finding three predominant “ethics orientations” among them, with associated cognitive maps and strategic actions. In our analyses, we use these orientations to complicate homogeneous appraisals of social researchers’ responses to new bureaucratic requirements, enriching our understanding of how such requirements affect the ways sociologists think about their occupation, approach their research, and mentor successive generations. These ethics orientations suggest the field of sociology is comprised of distinct political cohorts with diverging understandings of ethical review, and by extension, power and intellectual work. For some, ethical review signals a more consultative and therefore better approach to knowledge production, while for others it marks the end of an era of unfettered (and superior) intellectual pursuit in sociology.     

Obstacles to gaining ethical approval for a multi-centre study of family support

The NHS has emphasised the need for rigorous evaluations of preventative home-visiting support (Bull and others, 2004) in building a public health evidence base. Interdisciplinary studies involving the NHS in any capacity are subject to ethical review by NHS Research Ethics Committees. However, the current process of ethical review does not respond flexibly to research conducted by non-NHS organisations. Through documentary analysis, this paper describes the experience of a non-clinical research evaluation of a family support service offered during pregnancy and the difficulties encountered in gaining ethical approval. Implications for social science research with minimal NHS involvement are discussed and recommendations for improvements suggested.     

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.     

Social Media and Social Work: The Challenges of a New Ethical Space

ABSTRACT

Social media and other online technologies have transformed communication between social workers and service users, with many practitioners engaging and working with clients through social networking sites. While there are numerous ethical issues associated with online practice related to con?dentiality, dual relationships, and boundary crossing, there is lack of clarity about how to deal with such issues. This article uses a case example to develop a nuanced understanding of ethical issues and ethical behaviour in online spaces. We argue that social workers need to link their knowledge of the complex interplay between discourses that underpin daily practice like those related to power, permanency, authorship, audience, embodiment, and professionalism to social media created spaces. In doing this, social workers must retain their commitment to ethical values and critical reflective practice. We conclude with recommendations for education, research, and practice.     

Reflexive Research Ethics for Environmental Health and Justice: Academics and Movement-Building

Community-engaged research on environmental problems has reshaped researcher-participant relationships, academic-community interaction, and the role of community partners in human subjects protection and ethical oversight. We draw on our own and others' research collaborations with environmental health and justice social movement organizations to discuss the ethical concerns that emerge in community-engaged research. In this paper we introduce the concept of reflexive research ethics: ethical guidelines and decision-making principles that depend on continual reflexivity concerning the relationships between researchers and participants. Seeing ethics in this way can help scientists conduct research that simultaneously achieves a high level of professional conduct and protects the rights, well-being, and autonomy of both researchers and the multiple publics affected by research. We highlight our research with community-based organizations in Massachusetts, California, and Alaska, and discuss the potential impacts of the community or social movement on the research process and the potential impacts of research on community or social movement goals. We conclude by discussing ways in which the ethical concerns that surface in community-engaged research have led to advances in ethical research practices. This type of work raises ethical questions whose answers are broadly relevant for social movement, environmental, and public health scholars.     

Standard Bearers: Qualitative Sociologists’ Experiences with IRB Regulation

In response to the system for regulating research with human subjects, researchers have raised two apparently contradictory concerns: that IRBs are excessively inconsistent (often raised by biomedical researchers), and that they are excessively standardizing (often raised by qualitative interview researchers). Why does standardization appear as the dominant theme in qualitative researchers’ experiences with their IRBs? And how do qualitative researchers experience standardization in their IRB encounters? We focus on IRBs role as regulatory bureaucracies, which typically rely heavily on standardized communication and decisions to process information and make large numbers of decisions in a timely manner. We explore the role of standardization in IRB regulation of qualitative research in an analysis of semi-structured interviews with 26 qualitative sociologists from six research universities and three liberal arts colleges in the Northeastern United States. In a regulatory regime oriented toward the norms of experimental research, these frictions resulted partly from a lack of appropriate standardized language and decision-templates, but also from the inherent difficulties of applying standardized decisions to work that is unpredictable, unique, and difficult to routinize.     

Disability Simulations: Logical,Methodological and Ethical Issues

This paper examines issues of theory, methods and ethics in the use of disability simulations. Much of the educational, rehabilitation and counseling literature encourages teachers and counselors to use simulations to reduce prejudice toward persons with disabilities. However, the disability simulation literature reveals that: (a) there is typically a failure to consider the relationship between social/behavioral science theory and simulation design; (b) there are methodological weaknesses in most of the studies that render them virtually worthless to evaluate attitude change; and (c) there is little discussion of ethical concerns in disability simulations. A research agenda is proposed that focuses on logical, methodological and ethical issues in disability simulations. It is argued that simulations can be effective if: (a) certain ethical precautions are taken; (b) activities are well designed and evaluated; and (c) the simulation exercises are closely linked to social/behavioral science theory.     

Research ethics committees: values and power in higher education

The rise of research governance structures in universities has created huge disquiet amongst academic researchers. The unquestioning adoption of a medical model of ethical review based upon positivist methodological assumptions has created for many a mismatch between their own ongoing ethical research practice and the process of obtaining clearance from Research Ethics Committees (REC). This paper examines the issues that have contributed to dissatisfaction with the ethical review model that is prevalent within the modern university. Using examples from the authors’ own experiences, the dynamics of values, interests and power in research governance is examined from multiple perspectives including that of REC member and applicant; lecturer/student supervisor; researcher; and university administrator. The paper reveals a rift between the values and objectives of the key players in research governance within the modern university and concludes by asking whether differences can be resolved so that a collaborative approach to ethical review may be incorporated into a renewed academic research culture. It is suggested that the alternative is increasing alienation from anything to do with ‘ethics’, with potentially serious consequences for the ethical standards of social research.     

There are no Answers,Only Choices: Teaching Ethical Decision Making in Social Work

Abstract

In teaching students about ethical decision making in social work, it is essential that the students are able to recognise the moral implications of their work and develop a deep understanding about ethical issues and their personal responsibility for making ethical choices. Thus, more than a “how to do it” approach is needed and teaching students about values and ethics is an essential thread that runs through our experience-based social work education program. The present paper describes a learning unit that sought to teach students about ethical decision making as a critical thinking process and, in so doing, to integrate students’ knowledge and experience of values, ethics, policy, and research in the final year of study. The relationship between values, ethics, policy, research, and social work practice provided an ideal context within which students could learn to integrate their knowledge and experience and apply it directly to their fieldwork practice. The paper ends with our critical reflection on this teaching experience and a critique of decisionist ethical frameworks.     

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.     

Accounting for ethos or programmes for conduct? The brave new world of research ethics committees

This paper examines the operation of power and its consequences arising from the growth of new ethical bureaucracies in universities. We use the UK as a case study to illustrate more general points about the globalised nature and impact of such bureaucratisation. Our focus is on the social sciences as this is where, we argue, the impact is likely to be most marked. The paper is organised in five sections. The first introduces our concerns. Section 2 traces the genealogy of these new regimes of control in the UK. We then problematise the new ethical bureaucracies, making an analysis in terms of the shift in the locus of power away from researchers to becoming centralised in bureaucratic structures. In section 4 we explore some of the ways in which researchers might respond to the changing regimes of ethical control. Finally, we offer considerations of the ways in which ethical governance of research might be differently conducted so as to avoid the adverse consequences of new regimes of control on research practice. Our aim is to provoke debate and thereby contribute to a platform from which to reassert ways to ensure that research is ethical and that do not interfere with the production and consumption of critical social science.     

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.     

Innovations in teaching social work research

This article reviews the innovations in teaching research in social work education, including conceptual material and specific examples. There is attention to the ideological differences inherent in research and its instruction, methodology/technology innovations, and integrative and group approaches, among other developments. Examination of three major models of research instruction and their assumptions about the purpose of research in social work is presented. Discussion about ethical codes and curricular guidelines for social work programs in the United States and the United Kingdom provides a framework to understand the importance of teaching and learning research for the social work profession.     

Informed Consent with Children and Young People in Social Research: Is There Scope for Innovation?

Over 20 years of research has enhanced our understanding about the methodological and ethical benefits and challenges of involving children and young people in research. Concurrently, the increasing bureaucratisation of research ethics governance within UK universities has reified expectations about the methods used to gain informed consent for research participation. This paper explores how social researchers in the UK are navigating this tension and whether there is any scope for innovation through the use of technologies in how children and young people provide informed consent to take part in research. We conclude there is a need for the co‐creation of research information with children and young people and greater transparency by sharing creative solutions.     

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.