Jackie’s demeaning experience at the hands of HIV-research teams in Uganda is at once poignant and provocative. If her frustrations are aimed at the cavalier attitude of bio-medical research, her narrative poses some probing questions for anthropological practice. ‘Why?’ I hear you ask. What relevance do medical research ethics (or the lack of them) have for anthropologists? In this comment I suggest two ways in which we should take Jackie’s reflections to heart in our own practice.
The principle of ‘informed consent’ – which is at the heart of Jackie’s article – developed out of the precedents set in the post-war Nuremberg trials of Nazi doctors. It is now the cornerstone for all biomedical research guidelines concerning ‘human subjects’. Increasingly these are being adopted as a standard for other social science disciplines, enforced and monitored through institutional ethics committees. ‘Informed consent’ is of course a difficult term to define. How informed is informed? Is consent given once or does it need to be returned to during the course of the research? In what context is consent given? Such principles only make sense in a particular research situation.
Yet there is an anthropological literature that challenges ‘impositions’ of a bio-medical regulatory paradigm on the social sciences. Strathern (2001, 292) is highly suspicious of this ethical codification and its implications for ethnographic research. For her the increasing regulation of human subject research belittles the "power of social relations" and negates the "exploratory, indeterminate and unpredictable nature" of the ethnographic interaction. If, she argues, our informants are not ‘research subjects’ – as they are not necessarily the subjects of our research – then should a principle of ‘informed consent’ be rigidly applied to anthropology? It is an important and subtle argument for professional autonomy but also a form of methodological relativism – ‘we’ do it differently, and so these standards shouldn’t apply. Not all anthropologists agree, and the recent revision of the Association of Social Anthropology guidelines (www.asa.anthropology.ac.uk) adopts an opposing position, which insists upon a much tighter definition of informed consent.
There are other reasons for paying attention to the biomedical debates over ethics. As well as gaining comparative insight for our own disciplinary reflections on professional practice, they set a precedent for a more activist role for journals such as Anthropology Matters. A recent case is the conflict in the medical journals over AIDS vaccine trials in Africa and Asia. Sparked off by the energetic campaigning of Marcia Angell, then editor of the US medical journal New England Journal of Medicine the debate revolved around whether different principles for trials should and do apply in ‘developing’ countries (Angell 1997). In particular, should placebos be used as ‘controls’ to measure the efficacy of AIDS vaccine trials, when it is known that better treatments exist. The trials had a good purpose – given the expense of AZT, could a shorter course be equally effective? Yet does the end, namely quicker and more accurate information, justify the means? With the key point being that the two comparable trials being conducted in the United States were not using placebo controls.
Angell argued that the most efficacious alternative treatments should serve as controls in these trials in Africa and Asia, as they do in the US. One anthropological commentator criticised this as a "quest for moral purity getting in the way of conscientious social interventions" (Ulrich 1996). Or again, to put it more tersely, the ends justified the means.
At one level this is a return to that hoary old debate between universalism and relativism. Can there be one set of universal ethical standards, or is a more relativistic approach appropriate, one that is related to ‘local’ contexts? But it is not so simple. The campaigners who called for universal standards of care were accused of ‘ethical imperialism’. Their opponents sought to justify a research ethics that is ‘locally relevant’. One is that the present standard of care is so low that the placebo is no worse. This relativist argument is based on the recognition that as developing world communities have different standards of healthcare and life expectancy, different standards of care should be expected. Yet it also makes the research even more exploitative, because they wouldn’t be able to afford the treatment anyway. A stronger argument was that a placebo trial would be faster and provide more convincing results. People might suffer now, but it would be worth it in the long run. Yet would the results be locally relevant anyway? People in the West (who can afford these drugs) benefited from such research into different possible regimens – without risk. The reality is that, even with cuts in the costs of treatments, the costs of most AIDS treatments will remain impossibly high for the huge majority of African communities.
The question then is always an anthropological one: which communities count? Can one still delineate separate moral communities, or does transnational medical (and social science) research inevitably necessitate a minimum shared morality, where one cannot separate local from global, but has to see their inter-relationship? Attention also has to be directed to the local ethics committees, in Uganda and elsewhere, which adjudicate over such issues. Are they faced with conflicts of interest because of the financial support they receive from pharmaceutical companies? How are they appointed? How does one encourage a public discourse around ethics? All are difficult questions, but a necessary part of developing a shared sense of what counts as ethical practice within international medical research. I would argue that this sort of developing consensus around research ethics would also have to be the long-term aim of a genuinely post-colonial anthropology.
Ethics-talk can purify, presenting an ethical realm as somehow higher than, and separable from, the realms of politics, economics and history. Yet this set of ethical debates was successfully deployed to strategic political ends. Gradually the US sponsoring organisations were forced to change their plans, and the placebo trials were stopped.
We are left to consider whether the details of this case are specific to biomedicine? Does the notion that "human subjects in any part of the world should be protected by an irreducible set of ethical standards" (Angell 1997) really represent a regulatory imposition on anthropological practice? Whilst lofty pronunciations might seem unhelpful, it is but a general principle to be defined in particular times and places. Such principles are not a move to static universals, but are instead an invitation to consider the importance of globalising rights and the dialogues surrounding rights. More substance and specificity is given by the Council for International Organisations of Medical Science (1993) who state that "researchers working in developing countries have an ethical responsibility to provide treatment that conforms to the standard of care in the sponsoring country, when possible". And by the Declaration of Helsinki of the World Health Organisation that "in research on man, the interest of science and society should never take precedence over considerations related to the well-being of the patient" (quoted in Angell 1997).
Are these paternalistic declarations? I suggest that they are an attempt at putting together a basic, skeletal framework for consensus from which specific discussions and debates could depart. Such formulations are never sufficient to answer ethical dilemmas in themselves and they cannot make concepts like informed consent meaningful. Yet they are a necessary part of that answer, for without them, one would have to go back to first principles each time. Recent work by the Nuffield Council on bioethics has indeed built on these principles to address more closely the contexts in which informed consent are sought or clinical protocols are defined in bio-medical research within the developing world (www.nuffieldfoundation.org/bioethics).
As anthropologists we are not outside these debates. We might want to critique global statements about research ethics as masking a new politics of internationalism, but we should also see within such political developments issues of ethical concern for our own practice. We might well want to view the increasing imposition of ethical codes on anthropology as part of the same dynamic, but we should also remember that the discipline often compiled and drew on such codes at moments of political or economic crisis.
The risk of relying on our discipline’s political reflexivity to understand the world is that we avoid analysing our own conditions of work and the moral demands it places on us – we turn the gaze externally, rather than on ourselves. This leaves our own sense of professional values unexamined. I doubt one could ever define what counts as ‘ethical’ research. But this doesn’t validate a laissez-faire ethical relativism. Shouldn’t we, in deference to Jackie, insist on an ongoing dialogue about the politics and ethics of our research methods?
References
Angell, Marcia (1997) ‘The ethics of clinical research in the Third World’. New England Journal of Medicine, September 1997, vol. 337(12): 847-49 back
Council for International Organisations of Medical Sciences (1993): International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva. back
Strathern, M. (2000). Afterword: Accountability...and ethnography. Audit Cultures: Anthropological Studies in Accountability, Ethics and the Academy, M. Strathern. London: Routledge. back
Ulrich, George (1996). Common values in a shrinking world - reflections on the construction of ethical context. Paper presented at the session ‘The Ethics and Politics of Anthropological Research: Changing Paradigms’, EASA conference, Barcelona, July 1996. back
David Mills is currently Anthropology Co-ordinator at CSAP, the Centre for learning and teaching Sociology, Anthropology and Politics based in Birmingham. The centre encourages academics and students to treat teaching and training issues as worthy of research and publication in their own right. He is currently writing a political and institutional history of post-world war two social anthropology.