Do current consent and confidentiality requirements impede or enhance research with children with learning disabilities?

Recent changes in UK legislation on data protection and confidentiality have affected key aspects of the research process. They have led to much stricter approaches to research governance, leading in turn to more stringent scrutiny by medical ethics committees and National Health Service (NHS) Trusts. Almost all stages of research are affected, from participant recruitment to storage of data, eating into researcher time and consuming significant resources. The resulting constraints are examined in relation to a research programme on development in children with learning disabilities, highlighting the practical and ethical issues arising, with informed consent a particular challenge. Being multidisciplinary, learning disability research has to satisfy numerous regulatory bodies. For participants' rights to be fully respected and for projects to be completed within time and on budget, all contributors to the research process, including funders, need to be aware of the additional implications and demands imposed by the new regulations.     

A Case for Limiting the Reach of Institutional Review Boards

Institutional review boards (IRBs) governing social and behavioral research seem to systematically exceed the guidelines established by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. We examine a clandestine study of prostitution and another of employment discrimination and conclude that IRBs, more concerned about being sued than they are about protecting research subjects, get in the way of science and cause ethical problems as a consequence. We discuss the ethical principles involved and call for a suspension of all IRB review in the social and behavioral sciences.     

Ethical Actions: A Comparison of Individual and Group Recommendations

In order to examine the way ethical decisions are made, we asked ethicists, regulatory officials, and experienced researchers to review a set of scenarios that depict important ethical tensions in research. The method employed was “protocol analysis,” a talk-aloud technique pioneered by cognitive scientists. Each individual was asked to make recommendations for courses of action. Later, we held a focus group of university faculty and staff with either institutional review board experience or research ethics training. They too were asked to recommend actions. The results show there are areas where the two data collection approaches agree, as well as areas of considerable difference. Implications for training in the responsible conduct of research are discussed.     

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.     

Protecting persons in family therapy research: an overview of ethical and regulatory standards

Family therapists are expected to engage in ethical and responsible research, while maintaining rigorous ethical standards and adhering to federal regulations that require protection for research participants. We present a short historical overview of the significant events and ethical controversies leading to the formulation of current regulations in human subject research and review. Federal regulations and guidelines, including issues of informed consent, special populations, and conflict of interest are reviewed. A short list of recommendations to assist family therapists in staying abreast of contemporary research protocol is provided.     

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.     

The trickle‐down effect of ethical leadership in nonprofit soccer clubs

Nonprofit soccer clubs are currently facing many ethical challenges, such as abuse, doping and match fixing. While research suggests that organizational (board) ethical leadership may be effective to tackle these ethical issues, empirical support in the context of sport remains limited. Drawing on the perceptions of a sample of nonprofit soccer players (n = 438) and coaches (n = 106), we indicate that the coaches play an important mediating role regarding the associations between board ethical leadership and ethical climate. The theoretical underpinnings of ethical leadership—formed by social learning theory and social exchange theory—and the social distance between the board and the players in nonprofit soccer clubs provide support in this regard. In sum, our results demonstrate that the influence of board ethical leadership in nonprofit soccer clubs partly trickles down to the players via coach ethical leadership. Finally, practical implications for nonprofit soccer club management are discussed.     

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.     

Recovered memories:ethical guidelines to support professionals

There is a need for guidelines on recovered memories to support the work of professionals and provide protection for clients. This paper highlights the value added by the Canadian Psychological Association's Guidelines for Psychologists Addressing Recovered Memories (Crozier and Pettifor, 1996) in assisting professionals to deal with ethical issues in this area. The Guidelines in combination with a rational and intuitive ethical decision-making process are applied to three vignettes involving sexual abuse and possible recovered memories. This paper offers professionals an opportunity to review their practice according to approved Guidelines for dealing with the difficult issue of recovered memories.     

Mapping the ethical landscape of carbon capture and storage

This article describes a method of scoping for potential ethical contentions within a resource constrained research environment where actor participation and bottom?Cup analysis is precluded. Instead of reverting to a top?Cdown analytical structure, a data-led process is devised. This imitates a bottom?Cup analytic structure in the absence of the direct participation of actors, culminating in the construction of a map of the ethical landscape; a high-resolution ethical matrix of coded interpretations of various actors?? ethical framings of the technology. Despite its limitations, which are discussed, the map can subsequently support the identification of areas where ethical contentions may be raised. Here, the method is described with reference to the construction and analysis of a map of the ethical landscape of carbon capture and storage technology. Taken as a preliminary stage of a larger study, it can support the design and initiation of more sophisticated analyses which may integrate stronger bottom?Cup participation and facilitate a reflective, deliberative process amongst actors.     

International Ethical Safeguards: genetics and people with learning disabilities

This paper discusses the ethical issues and international standards relating to genetic research on people with learning disabilities. Research protocols must acknowledge the people who are subjects of such research and must reflect emerging disability philosophies. This research provides a brief historical context and considers five issues of fundamental importance to people with learning disabilities through a discussion of participation in the research design, independent advocacy, justice, non-discrimination and autonomy. These concerns have been investigated in England and abroad, and it is therefore valuable to undertake a review of the legal and ethical context of genetic research for vulnerable people who may be deemed unable to provide consent.     

Whose Project is it Anyway? Sharing and shaping the research and development agenda

The NHS and Community Care Act 1990 (NHSCCA) requires that local authorities should consult with service users in their review and planning of services. This requirement is open to various levels of interpretation. The exercise becomes more complex when planning and review are based on a funded research project, in which the voice of users can easily be lost or their participation only nominal. This article examines some of the key issues and dilemmas in partnership research, through critical evaluation of a research project in which the authors were involved. Paradoxically, it is issues of power, control, expertise, authority and accountability which emerge as recurrent themes in examination of the practice of partnership.     

‘What did you think about that?’ Researching children's perceptions of participation in a longitudinal genetic epidemiological study

This paper examines how empirical study of children's involvement in non‐therapeutic health research can contribute to our understanding of the significance of the research to the children themselves. This raises issues that are pertinent to, and which will guide policy relating to ethical protection in research. The paper begins with a brief review of the literature considering how children perceive research in general, and non‐therapeutic health research in particular. The empirical study is then described, outlining the approach to sampling, recruitment and the focus group method used. This is followed by consideration of several key issues relating to research with children, with particular reference to ethical protection. Copyright © 2002 John Wiley & Sons, Ltd.     

Observing abuse: Professional ethics and personal morality in field research

Based on the author's participant observation research in a state institution for the mentally retarded, this article deals with moral and ethical dilemmas that occur in research at settings characterized by routine human abuse. After a discussion of the choices posed by these dilemmas, the author presents preferred solutions. The importance of anticipating potential moral and ethical dilemmas prior to entering the field and delineating the relation between professional ethics and personal morality are discussed as implications of this problem.The author would like to thank Robert Bogdan and Shulamit Reinharz for their extensive comments on previous drafts of this article.Partial support for this article was provided through cooperative agreement No. G0085C03503 with the National Institute on Disability and Rehabilitation Research. The opinions expressed herein are solely those of the author.     

Ethical Research Involving Children: Encouraging Reflexive Engagement in Research with Children and Young People

Research involving children raises complex and well‐documented ethical questions and challenges that extend far beyond the reach of formal review and governance systems, where these exist. However, researchers collectively have a wealth of knowledge and experience in applying universal ethical principles in diverse social, cultural and methodological settings, which offers much potential for understanding how ethical concerns are responded to in situ. Through extensive consultation and research, the Ethical Research Involving Children (ERIC) project, discussed in this article, has drawn on this collective knowledge in generating evidence‐based resources that highlight best practice while grounding ethical decision‐making in lived experience.     

ETHICAL DILEMMAS IN FAMILY THERAPY

A review of the literature in the area of ethical dilemmas facing family therapists revealed that there were a number of issues facing family therapists which are not included in the Principles for Family Therapists (1984) of the American Association for Marriage and Family Therapy. Seventy-five family therapists from across the nation responded to a questionnaire which asked what ethical dilemmas they face and how helpful the ethical guidelines are with these dilemmas. Results indicate that family therapists are encountering dilemmas which are not included in the Principles, significantly more often than those that are included. The ethical principles were found to be helpful for those ethical dilemmas attended to by the Principles.     

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.     

Ethical challenges of community based participatory research: exploring researchers’ experience

Community-Based Participatory Research (CBPR) has been proposed as an equitable, empowering partnership approach to collaborative research. International literature about the ethical implications of CBPR suggests a continuing strong interest in the topic. However, there is a notable lack of research that captures the experience of ethical challenges of researchers from different countries who engage in CBPR. The aim of this research was to address this lack of evidence by exploring researchers’ experience of ethical challenges in CBPR at an international level. An innovative data collection method was designed utilising a purpose-built blog. Balancing participant protection and autonomy, partnership tensions, and enduring impacts of the researcher role emerged as the main themes. These findings illustrate the specific conflicts faced by researchers engaged in CBPR. This is largely as a result of the complexities of CBPR coupled with rigid ethics committee review that does not always take into account the more fluid nature of the approach.     

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.     

Human Rights and Human Subjects: Ethics and Strategies in Social Science Research*

New guidelines implemented by the U.S. Department of Health and Human Services exempt broad categories of social science research from regulation by university review boards. The analysis examines how exemption from regulation will change the way researchers manage ethical matters in the future. Social scientists will wish to protect the rights of research subjects and, at the same time, study sensitive social issues by scientific designs. As in the past, these goals will be incompatible in various ways. The analysis examines the parameters within which researchers will deal with several ethical and methodological dilemmas.