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Oslo Summer School in Comparative Social Science Studies 2008

The Ethics and Political Economy of Medical Research: Anthropological Perspectives

Lecturer: Professor Paul Wenzel Geissler,
London School of Hygiene and Tropical Medicine,
University of London, UK & University of Oslo, Norway

Main disciplines: Social Anthropology, Sociology, History, Social Studies of Science, Public Health

Dates: 21 - 25 July 2008
Course Credits: 10 pts (ECTS)
Limitation: 30 participants


Objectives
Medical field research among study populations in economically deprived societies – traditionally in Africa, Latin America and Asia, and more recently also including some of the ‘post-socialist’ countries – has throughout the 20th century provided a laboratory for biological, medical and administrative knowledge and practice. In addition to the discovery and dissemination of innovative technologies to alleviate or prevent ill-health, such research has generated transnational relationships between researchers and researched people, among scientists and within study communities and the wider public, as well as between academia and government, charities and industry. Linking different and disparate people, things and places, these networks transcend the neat scientific separation between subjects and objects of study to form wider collectives of knowledge production. These embrace both ‘study populations’ and ‘the scientific community’, and – spread across sites and institutions in diverse regions of the world – challenge familiar dichotomies such as ‘global’ and ‘local’, or ‘modern’ and its diverse opposites.

The social processes of ‘overseas’ research have – despite their academic interest and applied relevance, especially in relation to the ethics and politics of bioscientific research – only recently gained the attention of anthropologists. Our seminar explores this new field of anthropological inquiry, aiming to discern how ‘ethical’ concerns (in the broadest sense of the word) take shape in relation to historical, economic and political processes. By drawing upon social anthropological literature and on the participants’ research work, we will explore a research agenda that challenges and critiques, as well as contributes to ongoing international debates on the practice and ethics of overseas medical research. Taking inspiration from ethical reflections about the challenges of public health research under adverse economic and political conditions, as well as from ethnographic studies of the mundane realities of everyday research practices, we want to engage an open debate about the ethics and politics of medical science.

The seminar is directed on the one hand at social anthropologists and historians specifically interested in medical science and technology, development and policy, or (late) modernity and neoliberalisation, and on the other hand at social scientists, philosophers, scientists and medical doctors interested in ‘bioethics’ and the political economy of medicine. While the focus of the course will be on medical science in economically deprived societies and many examples will be taken from Africa, the aim is to situate research ethics within a wider historical, political and economic frame. Thus the course is hoped to be of interest also to those studying medical science and/or bioethics in ‘developed’ countries. Both theory-driven approaches to science and social critique, and professionally and politically engaged viewpoints will be present in the coursework, as well as, we hope, among the participants.

(In order to be able to include some of the participants’ interests and experiences into the course, we would be grateful if applicants could submit a short, one-page description of their research project and its ‘ethical’ implications with their application.)
 

 

LECTURE OUTLINE:

Day 1: Ethics and Ethnographies of Overseas Medical Research

Introduction: In the past two decades, the ethics of ‘overseas’ medical research – that is collaborative medical research conducted among populations in economically deprived countries – have become a subject of animated debates among doctors and scientists, and social scientists and philosophers. These debates are partly about ‘regulatory’ aspects of clinical research, such as informed consent, procedures of information, or balance of benefits, but they also touch upon fundamental ethical or political commitments: to freedom (e.g. of scientific progress, or of individual rights), to equality (based on the universality of bodily health and suffering), or to democracy (in terms of controlling science and benefiting from its fruits), which are challenged by global economic and political disparities. We begin the course with an overview over recent discussions. The aim is to trace some main lines of the debate, such as the controversy between ethical relativism and universal standards, the tension between quasi-legal frameworks and personal morality, and the discussion about the limits – geographically and politically – of doctors’ and scientists’ ethical responsibility. Moreover, we shall discern some of the central concepts and assumptions underlying the debate – such as e.g. ‘autonomy’, ‘community’ or ‘communication’– and begin examining them anthropologically.

 

Lecture 1: Recent debates about the ethics of overseas medical research (1): Relativism, universalism, perspectivalism

NOTE: Readings that is marked * will be included in the course compendium and sent to you in advance of the course. You are expected to have read the course compendium before attending the course.

Readings:

  • Krikorian, G. and E. Cosse (2007). “Civic think tank. Peter Lurie interviewed”. Nongovernmental politics. M. Feher. New York, Zone Books: 236-245.
  • Krikorian, G. (2007). “A new era of access to rights?” Nongovernmental politics. M. Feher. New York, Zone Books: 247-259.
  • Benatar, S. R. (2002). “Reflections and recommendations on research ethics in developing countries.” Social Science & Medicine 54:1131–1141.
  • Doumbo, O. K. (2005). “It takes a village: medical research and ethics in Mali.” Science 307: 679-681.
  • Emanuel, E. J., X. E. Currie, et al. (2005). “Undue inducement in clinical research in developing countries: is it a worry?” Lancet. 2005 Jul 23-29;366(9482):336-40.
  • Gbadegesin, S. (1993). “Bioethics and culture: an African perspective.” Bioethics 7(2-3): 257-62.
  • Hedgecoe, A.M. (2004) "Critical bioethics: beyond the social science critique of applied ethics" Bioethics 18(2):120-143.
  • * Molyneux, C. S., N. Peshu, et al. (2004). “Understanding of informed consent in a low-income setting: three case studies from the Kenyan Coast.” Social Science and Medicine 59(12): 2547-59.
  • * Strathern, M. (in preparation) “Can one rely on knowledge?”. In: Ethics and Ethnography. P. W. Geissler and C. Molyneux (eds.). Oxford, Berghahn.


     

Lecture 2: Recent debates about the ethics of overseas medical research (2): Local and global, private and public commitments

Readings:

  • * Farmer, P. and N. Gastineau Campos (2004). “New malaise: bioethics and human rights in the global era.” Journal of Law, Medicine & Ethics 32: 243-251.
  • * Kleinman, A. (1999). “Moral experience and ethical reflection: can ethnography reconcile them A quandary for 'the new bioethics'.” Daedalus (Special Issue: Bioethics and Beyond) 128(4): 69-97.
  • Page-Shafer, K., Saphonn, V., Sun, L. P., Vun, M. C., Cooper, D. A., & Kaldor, J. M. (2005). “HIV prevention research in a resource-limited setting: the experience of planning a trial in Cambodia”. The Lancet, 366(9495), 1499-1503.
  • Scheper-Hughes, N. (1995). “The primacy of the ethical: towards a militant anthropology.” Current Anthropology 36(6): 409-420.
  • * Ulrich, G. (in preparation). “Elucidating Ethics in Practice.” In: Ethics and Ethnography. P. W. Geissler and C. Molyneux (eds.). Oxford, Berghahn.
     

 

Day 2: Histories

Introduction: Medical research has a long history. Outside Europe it has often been associated with imperial expansion and colonialism. This legacy is ambiguous, including memories of medical progress, controlled diseases and improved health, as well as associations of oppression, violence and control. Today’s lectures will explore memories and histories of overseas medical research and their significance for the present. The aim is in particular to highlight the relation between science, knowledge and power in its various guises. On the one hand, we will look at colonial and post colonial forms of domination in relation to public health; on the other hand, we will look more closely at the ‘developmental’ nation state of the mid-20th century – at modern, scientific government – and at its promises and its demise in the end of the past century. Critical analyses of modern, imperial science and of the ordering power of scientific and governmental institutions provide an essential remedy to mid 20th century ‘modernisation’ theory and to other taken-for-granted understandings of ‘progress’. However, they should not obscure the indeed progressive ethical, social and political commitments that modern, 20th century science also can imply – along with its ordering and ‘disciplining’ role. They leave open the question whether some of the social and political hopes that modern science and medicine (and modernity as such) once generated, could be recuperated for the 21st century.

 

Lecture 3: Memories and histories of medical research – African examples

Film: Plague (Kenya 1950s)

Readings:

  • * Comaroff, J. (1993). “The diseased heart of Africa. Medicine, colonialism, and the black body”. In: Knowledge, Power, and Practice: The Anthropology of Medicine and Everyday Life. S.Lindenbaum and M. Lock (eds.). Berkeley, U California P: 305-327.
  • Geissler, P. W. (in preparation.). “Parasite lost. Remembering modern times with Kenyan government medical scientists.” In: Ethics and Ethnography. P. W. Geissler and C. Molyneux (eds.). Oxford, Berghahn.
  • Packard, R. M. (1993). “The invention of the 'tropical worker': medical research and the quest for central African labor on the South African gold mines, 1903-36.” Journal of African History 34(2): 271-92.
  • White, L. (1995). “They could make their victims dull: genders and genres, fantasies and cures in colonial southern Uganda.” American Historical Review 100: 1379-1402.


     

Lecture 4: States, government and medical science

Readings:

  • Fassin, D. (2007). “Humanitarianism: a nongovernmental government”. Nongovernmental politics. M. Feher. New York, Zone Books: 149-159.
  • Feher, M. and P. Mangeot (2007). “Learning from dilemmas. Rony Brauman interviewed.” Nongovernmental politics. M. Feher. New York, Zone Books: 131-147.
  • Lachenal, G. (in preparation). “State collapse, neo-liberal government and the economy of AIDS research in Cameroon”.
  • Ombongi, K. (in preparation). “The historical Interface between the State and Medical Science in Africa: Kenya’s Case”. In: Ethics and Ethnography. P. W. Geissler and C. Molyneux (eds.). Oxford, Berghahn.
  • Redfield, P. (2006). “A less modest witness: Collective advocacy and motivated truth in a medical humanitarian movement.” American Ethnologist, 33(1), 3-26.
  • Langwick, S. (in preparation) “Healers and Scientists: The Epistemological Politics of Research about Medicinal Plants in Tanzania.” In: Ethics and Ethnography. P. W. Geissler and C. Molyneux (eds.). Oxford, Berghahn.
  • de Waal, A. (2007). Humanitarianism reconfigured: philanthropic globalisation and the new solidarity. In: Nongovernmental Politics. M. Feher. New York, Zone Books: 183-195.

     

 

Day 3: Social Lives of Research

Introduction: Clinical trials and other medical research constitute social relations between research scientists and doctors, technical staff and fieldworkers, and actual study subjects and their families and neighbours. This heterogeneous ‘trial community’ is very different from what normally is designated as ‘the community’ vis-à-vis scientific research, that is the local, poor, disease-ridden and medically underserved resource population from which study subjects are recruited: while ‘the community’ is usually imagined as comparatively stable and homogeneous, ‘trial communities’ are always translocal, mobile and marked by diverging groups and interests. Yet, ‘trial communities’ differ also from completely delocalised ‘networks’, which some recent social studies of science focus on, in that they have place, a localised everyday life composed of more or less immediate and generative social interactions. Our aim in these lectures is to reflect upon this everyday life of ‘trial communities’. As part of this we will also discuss the constitution of ‘the community’ (in the restricted sense noted above) as a distinct grouping, and upon unintentional and purposive engagements with the latter, as in ‘community mobilisation or engagement’.

 

Lecture 5: Local social lives of research

Readings:

  • * Fairhead, J., M. Leach, et al. (2006). “Public engagement with science? Local understandings of a vaccine trial in The Gambia.” Journal of Biosocial Science, 38(1):103-116.
  • Geissler, P. W. (2005). “Kachinja are coming: Encounters around a medical research project in a Kenyan village.” Africa 75(2): 173-202.
  • Meinert, L. (in preparation). “Cutting new networks. Kin relations and research relations in an ARV study in Uganda”. Paper presented at the workshop ‘Changing states of science: ethnographic and historical perspectives on medical research in contemporary Africa’, organised by the Danish International Development Agency, November 2005.
  • Parker, M., T. Allen, et al. (2008). “Resisting control of neglected tropical diseases: dilemmas in the mass treatment of Schistosomiasis and soil-transmitted helminths in north-western Uganda.” Journal of Biosocial Sciences, in press.
  • Whyte, S. R. (in preparation). “Writing knowledge and acknowledgement: possibilities in medical research”. In: Ethics and Ethnography. P. W. Geissler and C. Molyneux (eds.). Oxford, Berghahn.
     

 

Lecture 6: Making and relating to ‘community’– productive strategies of engagement

Two films: Molyneux and Heisch

Readings (30p)

  • Marsh, V., D.Kamuya, C.Gikonyo, C.Molyneux (2008) “Beginning community engagement at a busy biomedical research programme: experiences from KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi”. Social Science and Medicine, in press.
  • Molyneux, C. S., N. Peshu, et al. (2005). “Trust and informed consent: insights from community members on the Kenyan coast.” Social Science and Medicine 61(7): 1463-73.
  • * Molyneux, C. S., D. R. Wassenaar, et al. (2005). “'Even if they ask you to stand by a tree all day, you will have to do it (laughter)...!': community voices on the notion and practice of informed consent for biomedical research in developing countries.” Social Science and Medicine 61(2): 443-54.
     

 

Day 4: The Value of Research

Introduction: Collaborative medical research funded by agencies in Europe or North America and carried out among people in economically poor regions involves flows of resources and of large amounts of money. Some clinical trials (e.g. private pharmaceutical industry R&D) and other studies (e.g. genetics) have the potential to generate profits for scientists and pharmaceutical companies. But even where this is not the case, as in the publicly funded research most of us engage in, collaborative overseas research involves huge disparities in wealth and power. Meanwhile, one of the mainstays of modern ethics is ‘equality’ – such as of rights and entitlements, or of means and standards of life and survival. This commitment to equality crosses ideological divides and is particularly strong in medicine –since bodily suffering is universal – and in science – as scientific discovery and truth claim universal validity.

The resulting ethical conundrum can be conceptualised differently: while some insist that only absolutely equal medical treatments and life chances can secure the just conduct of research, others may argue for contextual or relative standards in different places; while some emphasise the equality of rights – as reflected in procedures of consent and study subjects’ statutory rights – others focus on the equality of entitlements and resources; and while some invest into free and equal communication in order to overcome material inequalities, others (including many study subjects) take inequality for granted and aim to strike the best possible deal under imbalanced circumstances. These lectures aim to explore the diverse conceptualisations of value around medical research – of bodies, medicines, findings etc. – and to focus on the diversity of interests and their economic context.

 

Lecture 7: Gifts, commodities and other transactions

Readings:

  • * Fairhead, J., M. Leach, et al. (2006). “Where techno-science meets poverty: medical research and the economy of blood in The Gambia, West Africa.” Social Science and Medicine 63(4): 1109-20.
  • Geissler, P. W., A.Kelly, B.Imokhuede, R.Pool (2008). “‘He is now like a brother, I can even give him some blood’ – relational ethics and material exchanges in a malaria vaccine ‘trial community’ in The Gambia”. Social Science and Medicine, in press.
  • Geissler, P. W. and R. J. Prince (2008). “Active compounds and atoms of society: knowing difference in pharmacognostics, psychometrics and cultural relativism.” Social Studies of Science in press.
  • Hayden, C. (2007). “Taking as giving: bioscience, exchange, and the politics of benefit-sharing.” Social Studies of Science 37: 729-758.
     



Lecture 8: Interests and contests

Readings:

  • Angell, M. (2004). “Excess in the pharmaceutical industry.” CMAJ 171(1451-1453).
  • * Petryna, A. (2005). “Ethical Variability: Drug Development and Globalizing Clinical Trials.” American Ethnologist 32(2): 183-197.
  • * Rajan, K. S. (2007). “Biocapital as an emergent form of life. Speculations on the figure of the experimental subject”. In: Biosocialities, Genetics and the Social Sciences: Making Biologies and identities. S. Gibbons and C. Novas. London, Routledge: 157-188.
  • Scheper-Hughes, N. (2000). “The global traffic in human organs.” Current Anthropology 41(2): 191-224.
  • Turnbull, D. (1989). “The Push for a Malaria Vaccine.” Social Studies of Science 19(2): 283-300.
     

 


Day 5: Broken Frames and Enclosed Spaces

Introduction: The last set of lectures will explore the place of medical research in the context of recent political and economic transformations. Changes to government and to the nation state – some resulting from political unrest, others due to neoliberal reforms and structural adjustments – as well as shifting global economic relations challenge many of the assumptions that underlie our thinking about research collaboration, medical science and public health, and bioethics. The classic developmental model of academia and national governments producing, controlling and implementing innovative medical knowledge is put into question by the new transnational scientific networks and their political economy. The very idea of ‘public health’ needs to be reconsidered. What is ‘the public’, or what a citizen, if government becomes transnational and is taken over by new ‘non-governmental’ and even private, for-profit actors, which can be either either smaller or larger than the old nation state and its society? What is ‘scientific progress’ once the link between science and government is broken, and when discoveries have become less about truth than about investment hypes and risks. What is ‘health’ in an age of genetic profiling and optimization, on the one hand, and pandemics and mere survival on the other? And, to return the debate to medical research as an ethical project: what could be the relationships between scientific medicine, public health, and the democratic project at this juncture?

 

Lecture 9 and 10: Public health - medical research and democratic process

Readings:

  • * Fassin, D. (2007). “Humanitarianism as a Politics of Life.” Public Culture 19(3): 499-520.
  • * Feher, M. (2007). “The governed in politics. Nongovernmental Politics”. M. Feher. New York, Zone Books: 12-27.
  • * Ferguson, J. (2005). “Seeing Like an Oil Company: Space, Security, and Global Capital in Neoliberal Africa.” American Anthropologist 107(3): 377-382.
  • * Caldeira, T. (1996). “Fortified Enclaves: The New Urban Segregation.” Public Culture 8(2): 303-328.
  • * Ong, A. (2004). “The Chinese Axis: Zoning Technologies and Variegated Sovereignty.” Journal of East Asian Studies 4: 69-96.
     

 

Non-essential additional readings:

  • Arnold, D. (1993). Colonizing the Body. State Medicine and Epidemic Disease in Nineteenth Century India. Berkeley, U California P.
  • Booth, K. (2004). Local Women, Global Science. Fighting AIDS in Kenya. Bloomington, Indiana University Press
  • Charlesworth, M. (1989). Life among the scientists : an anthropological study of an Australian scientific community. Melbourne Oxford University Press.
  • Farmer, P. (2003). Pathologies of Power: Health, Human Rights, and the New War on the Poor. Berkeley, CA, University of California Press.
  • Fairhead, J and M. Leach, 2007, Vaccine anxieties: global science, child health and society. London: Earthscan, Science in Society Series
  • Fassin, D. (2007). When Bodies Remember: experiences and politics of AIDS in South Africa. Berkley, University of California Press.
  • Feher, M. (ed) (2007). Nongovernmental politics. New York, Zone Books:
  • Franklin, S. and M. Lock (2003). Remaking Life and Death: Towards an Anthropology of the Biosciences. Santa Fe, School of American Research Press / James Currey.
  • Gibbon, S. and C. Novas (2007). Biosocialities, Genetics and the Social Sciences Making Biologies and Identities. London, Routledge.
  • Hunt, N. R. (1999). A Colonial Lexicon: Of Birth Ritual, Medicalization, and Mobility in the Congo, Duke University Press.
  • Kuhse, H. and P.Singer (eds) Bioethics: an anthology. Oxford, WileyBlackwell
  • Petryna, A. (2002) Life Exposed: Biological Citizens after Chernobyl. Princeton: Princeton UP.
  • Rajan, K. S. (2006). Biocapital: The Constitution of Postgenomic Life. Durham, Duke UP.
  • Rose, N. (2006). The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton, Princeton UP.
  • Vaughan, M. (1991). Curing Their Ills. Colonial Power and African Illness. Cambridge, Polity Press.

 

The Lecturer
Before training as a social anthropologist at the Universities of Copenhagen and Cambridge, Wenzel Geissler studied zoology at the University of Copenhagen. Fieldwork for both degrees was conducted in Kenya, and Africa. Since converting to social anthropology, his research interests have gradually broadened from an interest in infectious diseases, school health and medicine use, to focus on questions of kinship/relatedness and generation, as well as of social change and memory. Since 1994 he has been engaged in long-term fieldwork in western Kenya, an area suffering from the severe impact of the AIDS epidemic. More recently, his research is about the ethnography of medical research in different African study sites, trying to bring together Africanist anthropology, anthropological interest in science, and questions of medical research ethics.

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