Discussing research ethics and human vulnerability in an international context
The international symposium ‘“Have We Become Too Ethical”? Managing Vulnerability in Research Involving Human Subjects’ gathered together academics, ethics committee experts, and representatives of national and European funding agencies to debate the value and efficiency of research ethics review processes.[note 1]For more information, see the symposium’s website: http://www.centreforbionetworking.org/news-and-events/interntional-symposium-have-we-become-too-ethical-managing-vulnerability-in-human-subject-research/
This one-day event, held on 9 November 2015 at the University of Sussex, was organised by the departments of anthropology at Sussex and Durham universities.
Since the beginning of this century, UK-funded research involving human subjects must undergo review by an ethics committee, and other countries are adopting similar requirements. Bringing together researchers from diverse fields and ethics committee experts, the symposium asked whether such research ethics review has become too restrictive or too permissive. It further explored the consequences for ethics review of conflicting notions and philosophical assumptions of ethics, the diverse cultural and social contexts in which ethical problems arise, and the complexities of implementing ethical guidelines and monitoring research ethics in practice.
The symposium began with two panels of speakers, followed by a ‘Question Time’ panel debate. This last panel, made up of representatives of major UK and EU research funding bodies, such as the ESRC, ERC, Wellcome Trust, and disciplinary professional associations (ASA, BSA), answered questions put to them by the audience. Organisers of the symposium gathered questions from the wider public via an ‘Ethics Review Idea Box’ (which was available online and at the symposium), and posed these questions to the panel, as well.
The panels and discussions examined the meaning of research ethics as well as their institutional form, looking at the role of ethics review boards as currently constituted. Of central concern in this discussion was the effect ethics review can have on the nature of the research we conduct. One of the speakers, Peter Pels of Leiden University, observed that the question of research ethics feeds directly into the issue of how we produce knowledge. Several participants observed that the ethical dilemmas that often surface in fieldwork are of a different nature than the ethical concerns addressed in formal ethical review procedures.
Presentations discussed the importance of raising public awareness of the cultural and historical specificity of ethics, as well as their complexity. Individual presentations demonstrated the diversity of approaches in regulating research ethics by drawing on a range of cases, from countries with well-established institutional review boards (UK) to countries where requirements for ethics review by committee are currently being revised (USA) or are altogether absent (Netherlands).
The presentations of the first panel discussed ethics review at home, highlighting the historical and embedded nature of conducting ethics review by committee. These pointed to a shift in governing research ethics in recent years, from bottom-up approaches that lay responsibility with researchers and discipline-specific professional associations to more centralised approaches and bodies of regulators that may be more attuned to biomedical and institutional risks rather than to ethical concerns of social science research participants. Adam Hedgecoe, a sociologist from Cardiff University, showed that historical developments in ethics review were not so much influenced by scandalous events, as it is usually presumed, but by reputational risk and institutional needs related to governance. Drawing on his experiences of doing research in the NHS, Hedgecoe observed that social scientists have often been excluded from playing an active role in formulating ethics frameworks.
Pels, a professor of anthropology, called for developing models for governing research ethics that take into account the collaborative nature of research practice. Scientific knowledge, he said, is ‘produced on the basis of social relations’ that researchers develop in the field. Research material is ‘co-produced’ and ‘co-owned’ by researchers and research subjects, and this collective ownership should be a key consideration when making decisions about sharing, using, and archiving research data.
The complex ethical issues arising in the context of transnational research collaborations were the main concern of the speakers on the second panel. Speaking about collaborative research in health care involving scientists in the United States and China, Priscilla Song from Washington University discussed how incommensurable definitions of ‘ethically responsible research’ may exist between different countries, and the challenges this presents for the practice of research. For example, in contrast to the United States, China has little to show by way of ethical guidelines for biomedical research. Such definitions may vary within countries as well, as the ‘Common Rule’ – the rule of ethics regarding biomedical and behavioural research involving human subjects in the United States – is currently undergoing overhaul, as it has been deemed by many to be heavily bureaucratised and too restrictive for research practice.
One of the main themes that emerged during the conference was that context matters. As Ron Iphofen, an independent consultant for research agencies in the UK and Europe, suggested, ‘context is nearly everything in ethics reviews’. Cultural variations, as well as differences between disciplines and complex research fields, add a set of challenges to how we define and monitor research ethics. Interdisciplinary research projects add to the complexity of the issue at hand.
Margaret Sleeboom-Faulkner, the symposium co-organiser from the University of Sussex, suggested that understanding the complex and nuanced nature of ethics is essential: ‘Ethics reviews often presume that other countries have the same notions about ethics’, and this can be counterproductive for researchers at all levels, including students. Observing that the representatives of funding and professional organisations agree with these points, she reiterated the need for universities to incorporate such considerations in the design and implementation of ethics review procedures.
An area of lively debate concerned the institutional form and mechanisms through which ethics review is conducted, and the appropriateness and effectiveness of ethics guidelines and review boards. Hedgecoe warned against the institutionalisation of research ethics. Fellow sociologist, Martin Tolich from the University of Otago, New Zealand, argued that, considering that ethics review has become the norm, it is necessary to establish modes of ethics review that can cater for the needs of non-academic researchers.
The make-up, remit, and responsibilities of institutional review boards emerged as an area of concern during discussions. Iphofen suggested that ‘we should ask the same questions about ethics committees that we ask about researchers’, in other words: What are the skills and expertise of these committees? Why and how do these committees conduct ethics reviews? Fair, transparent, and accountable ethics reviews are essential for protecting human subjects, especially in the field of health care, where empirical research is important for distinguishing harmful or useless forms of health care.
The symposium prompted intense and productive discussions around the role of ethics committees as gatekeepers in the research process. In his closing remarks, symposium co-organiser Bob Simpson stressed the need to critically reflect on and find ways to redress the ‘power imbalances’ that lie at the heart of research ethics deliberations. Such power disparities concern as much the relationship between researchers and subjects as the relationships between researchers and ethics committees.
One of the main conclusions emerging from the symposium is that ethics review cannot be static, but instead should be a dynamic process that reflects the flexible and emergent nature of research. This view was shared by representatives of funding bodies who recognised the need to develop new toolkits to monitor research ethics that reflect the processual character of research. Verónica Martínez-Ocaña, speaking as a representative of the European Research Council (ERC), an EU funding body, said the ERC is already working closely with scientists towards that end.
The symposium was co-organised by Margaret Sleeboom-Faulkner (University of Sussex) and Bob Simpson (University of Durham), with financial support from the ERC and Wellcome Trust.
The ideas and questions formulated at this event will form the basis for a colloquium that will take place in spring 2016 at the University of Durham.
Ron Iphofen, Independent research consultant
Adam Hedgecoe, Cardiff University
Peter Pels, Leiden University
Priscilla Song, Washington University
Rachel Douglas-Jones, IT University of Copenhagen
Martin Tolich, University of Otago
‘Question Time’ panel
Verónica Martínez-Ocaña, Scientific Officer, Ethics Sector, European Research Council
Michelle Dobson, Head of Policy and Cohorts, Economic and Social Research Council
Katherine Littler, Senior Policy Adviser, Wellcome Trust
Lucy Pickering, Ethics Lead, Association of Social Anthropologists (ASA)
Rose Barbour, British Sociological Association (BSA)