Wim Van Daele
In Research as Development, Salla Sariola and Bob Simpson describe the numerous moral quandaries that arise in global biomedical collaboration. Their vivid account of two clinical trials conducted in Sri Lanka provides a window into the “entanglement of biomedical research, bioethics and development” (p. 19). The authors deftly narrate how ethical protocols, informed consent, material arrangements of testing sites, funding sources, differential power relations, local political, social, and economic contexts, and multiple subjectivities come together in specific ways and get renegotiated when clinical trials get implemented on the ground. Here, we get a clear sense of the painstaking work that is required to bring and hold these heterogeneous aspects together. By delving into this complexity, the book provides a poignant critique of a simplistic diffusionist hub-and-spoke model where ethics and development are assumed to move from the center to the periphery. In this model, ethics and development are deemed to be what the periphery lacks. Instead, the book offers us an account of transformations taking place in the periphery and actively shaping developments at the center.
After the introduction, which sets out the themes and frames of this book, we are given an overview of the local context of biomedicine in Sri Lanka as well as the research governance in place, including funding bodies and ethical committees. Thereafter, Chapters 3 and 4 take us respectively into the Joint Pain Trial and the Paraquat Poisoning Trial. The former is an industry-sponsored trial for Western markets and was attracted to Sri Lanka by a local research team in order to build their capacity for conducting clinical trials according to international standards and ethics. Such capacity building entails the arduous work of commensuration. The latter trial, by contrast, is informed by a public health concern. It aims to train Asian researchers and doctors to better handle self-inflicted Paraquat pesticide poisoning through the testing of potential antidotes and the set-up of an Indo–Sri Lanka collaboration.
Chapter 5 provides a seeming interlude between discussions of the messy realities on the ground by delving into the intellectual roots of the individualized autonomous Western subject underpinning the notion of informed consent. This Western subject stands in remarkable contrast to the Sri Lankan Asian heteronomous person. When informed consent and participation in the clinical trial are part of a collective decision-making process involving the wider family, it becomes necessary to rethink ways of obtaining culturally appropriate informed consent.
Chapter 6 explores the various power- and knowledge-related contradictions and creative processes of renegotiation that take place on the ground when universalizing bioethics is implemented in Sri Lanka. The ethical quandaries involved in a clinical trial with extremely vulnerable people that have inflicted self-harm through pesticide poisoning is treated in Chapter 7, which elicits a fascinating dynamic where the pesticide poisoning patient gradually moves from an abject, stigmatized state to an object of research and finally a rights-bearing subject. We ascend scale to the global level in Chapter 8, where we learn how ethics easily turns into an anti-politics machine, hiding its political underpinnings by transforming issues concerning benefits, profit motives, and competitive versus cooperative scientific relationships into disembedded and universalized matters. The authors conclude, however, that ethics is continuously being renegotiated in the messy reality of everyday practice in different contexts, thereby rendering these hidden political parameters of bioethics again explicit and open for discussion.
Aside from the specific topics and vivid cases discussed in the chapters, there are several transversal themes that recur throughout the book. The obvious themes of biomedical research and bioethics are covered thoroughly throughout, with highly instructive cases of local renegotiations, cases in which universalist claims in ethics and science travel to new contexts. We are offered a telling example of friction and creative improvisation in Chapter 6, where the local paternalistic role of doctors, trusted as all-knowing healers and providers of a utilitarian benevolent service, is displaced during the trial by the novel research role of detached observers who, due to randomization and anonymization protocols, are not all-knowing. The authors present another important instance of ethical messiness and quandaries in Chapter 7, where informed consent has to be obtained from people who have inflicted harm on themselves, hovering between life and death, to participate in a trial that may or may not save their lives, and where the necessary placebo poses additional ethical questions. Contrastingly, the transversal theme of development features less centrally throughout. Development remains generally present in the background and comes to the fore in discussion of global health debates, the ambiguities of international relations and contexts of global collaboration, and the resonances of bioethics and development as anti-politics machines.
Two more important themes, the roles of power and dynamics of assemblages, reemerge in several instances. In the fourth and sixth chapters, the authors give us a clear insight in the power dynamics of a clinical trial, the success of which rests in a flat hierarchy where even superiors are not aware of everything. The diffused power of the flat community of co-research scientists encounters the Sri Lankan context of medical paternalism in hospitals, where hierarchies are rigid and compliance to superiors is the cultural norm. This encounter has reconfigured these organizational hierarchies and relationships, causing confusion sometimes yet involving creative negotiations and improvisation at other times. In other words, a lot of work from different actors goes into stabilizing the assemblage of the trial and in bringing and holding things together. Power thus emerges as an essential source in both the potential destabilization and stabilization of the clinical trial. The assemblage approach, underpinning the frame of the book, could have been developed more to tease out clearly how global biomedicine clinical trials are non-harmonious, unstable and multi-scalar, stabilized and held together through active work and partial connections in different sites and contexts.
Subjectivity receives special treatment in Chapter 5, but it reemerges as a central dynamic in other chapters as well, and it could be foregrounded in further research as a central analytic in the encounter between local contexts and universalist claims. Additionally, given Bob Simpson’s earlier work with theories of the gift (Simpson 2004), it is surprising that this body of literature has received little attention here. It could have provided additional depth to the ambiguities regarding trust and sharing involved in global collaboration. Finally, the endogenous health traditions and the ethics that surround these could have been discussed in greater depth, especially the multifarious and ambiguous connections that exist between these medical traditions and biomedicine, as these together shape overall medical practice and governance in Sri Lanka.
In sum, this is a very inspiring book that incites us to think in novel ways about the crucial theme of ethics in global bio- and inter-medical collaboration. It will be highly relevant to scholars in both social and medical sciences and accessible to students.
Simpson, B. 2004. Impossible Gifts: Bodies, Buddhism and Bioethics in Contemporary Sri Lanka. The Journal of the Royal Anthropological Institute 10: 839–59.