George Marcus claims that ‘classic anthropological ethnography, especially in its development in the apprentice project/dissertation form, was designed to provide answers, or at least data, for questions that anthropology had for it’ (Marcus 2008: 52). ‘Nowadays’, he continues,
‘anthropology itself does not pose these questions […] thus it is a contemporary burden of projects of anthropological research — and especially apprentice ones — to identify these question-asking domains’ (Marcus 2008: 52). In a field already thick with its own commentators, what role exists for extended ethnography or slow anthropological analysis? I opened the thesis in a way which outlined some of the themes it will address; here I detail questions that run throughout. I suggest that while the International Science and Bioethics Collaborations (ISBC) project identified a question-asking arena — the challenges of international collaboration in scientific research — the questions it has posed within that ‘question asking domain’ serve questions that anthropology itself continues to have; material gathered on the ISBC project and for this doctoral research contributes to longstanding debates within the canon, and that which is anthropological need not
— despite utilitarian research environments — be relegated as secondary to the interests of other domains.
I began my study with a strong interest in how ethics committees make decisions, not dissimilar from that of Stark (2011a, 2011b), or Lamont’s (2009) work on the deliberations of academics.
The research shares with Stark (2011a, 2011b) a concern with what happens inside ethics committee rooms, a common interest in the creation and sustaining of ‘the image that members have reached a legitimate decision’ (Stark 2011a:233). Although attempts to get closer to decision-making took me elsewhere,11 an interest in ‘how disparate evaluators reach collective agreement’ (Camic, Gross and Lamont 2011:19) remains a question in this text. However, ethics committees have a claim on the making of another kind of knowledge. Stark puts it plainly when she writes that ‘[w]hen researchers look beyond the administrative burden of IRBs, they find that IRBs are consequential because they affect how researchers go about creating knowledge - and, as
11 I did collect material from ethics review committee meetings I was present at in Sri Lanka, Taiwan, the Philippines, Thailand and China, mostly in my capacity as a trainee Surveyor. I do not bring the material together to produce an analysis of decision-making practices in this thesis however, in part because of the resources that would be required for translation but more significantly because my focus shifted during research and analysis towards how participants in committees describe and experience the problems of decision-making (Chapters 3, 4 and 5).
a result, the kinds of things that are knowable’ (2011a:234, emphasis added). This is something I explore in the chapters to come.
Ethics
The starting point of any good ethnographic analysis must be an examination of the categories by which people live their lives. The rapidly proliferating language of ethics (Simpson 2012: 153) is the category under examination here. I explore the formation of the concept through its articulation in ‘formal and informal practices, where and by whom it is contested, [and] how it reasserts itself in the face of challenges to its integrity or meaning’ (Jasanoff 2005:19). Throughout the thesis the way in which ‘ethics’ is used, called upon and summoned is examined, the edges and limits of its reach explored. At a most general level, this inquiry addresses the question of the concept of ethics as it is employed in the governance of biomedical research. How has it been brought in to the making of good science, what is its given role? More specifically, the thesis asks what ethics is for the members and participants in the Forum for Ethics Review Committees in Asia and the Pacific. Who gets written in to what ethics is to be? What are the social relationships that ethics inscribes, how does it intervene on the social, what are its tools, what counts as an accomplishment?
Though the conceptual centering work of ethics is powerful (it links transparency and accountability, takes on the languages of human rights, efficiency, economic use of resources, quality, even justice in its promises to check the strong and protect the weak), ethics review committees have been accused of being unethical, both within medicine and law. In this pitch of one ‘ethics’ against another, academics in the USA have challenged Ethics Review Committees as unconstitutional, using First Amendment concerns (Lerner 2007) and issues of censorship12 (Hamburger 2004, 2007; Weinstein 2007a, 2007b; Bledsoe et al. 2007; Menikoff 2007; Katz 2007). The effect of an IRB on ‘how researchers go about creating knowledge’ comes from their attention to methodology, as ‘IRBs might suggest changes to researchers’ site selection, sample size, recruiting methods or interview questions’ (Stark 2011b: 74), rarely approving research without requiring some changes to the proposal. Stark writes that
IRB members suggest (read: require) changes that a researcher could make to the proposal that would result in the board’s approval […] This coercive power to change research is quite
12 [T]he act of inspecting some form of expression - anything from a scientific finding or a political opinion to a work of art - in order to suppress or delete elements alleged to be harmful, offensive, or immoral (Bledsoe et al. 2007:596).
effective since getting approval is the ultimate goal for researchers who submit protocols (2011a:234).
It is worth reflecting on Stark’s comment with an eye to literatures in the history of science.
Recounting Shapin and Schaffer’s analysis of scientific life in the 1600s, Haraway writes that ‘[e]
xperimental philosophy — science — could spread only as its materialized practices spread. This was not a question of ideas, but of the apparatus of production of what could count as knowledge’ (Haraway 1996:430; Shapin and Schaffer 2011 [1985]:25). ‘Ethics’ is on the move; as a result of its integration into the making of science, not merely its affirmation, its materialized practices too must spread. While the question of what an ethics committee is in the USA is largely solved (Stark 2011b), their establishment in Asia is ongoing.
What is an ethics committee?
Initial questions on how (and why) ethics decisions were apparently being taken in the ‘same’ way in different places led me to questions on why it was that the committee itself was the form of choice for making these decisions. Indeed, what was the committee as ‘a form’ (Riles 2001)? An ethics committee is a group of people but the idea of it is more than the instantiation of it at any given time. Was this one of the qualities that allowed it to move? Another way of asking why the ethics committee is enjoying such proliferation is to ask “what are the problems to which the ethics committee is a solution?” My overview of the spread of biomedical research and GCP above provides some direction, but there are further answers.
As Dr Muthuswamy’s concerns at the Regional Collaborative Workshop illustrate, ethics committees are a form of managing biomedical research and the consequences of the knowledge it produces. Strathern describes ‘a particularly Euro-American oscillation between the condition of knowing through investigation (research) and the condition of asking what is to be done with that knowledge (management)’ (2006:195). If, as I am suggesting, ethics committees embody this oscillation, how does this play out in Asia?
How does ethics work as governance?
Ethics committees have become a point through which all research must pass. In studying the implications of this development, I have sought to understand what kind of control they are thought to have over research and how this is enacted. FERCAP’s capacity-building concern with
‘how to get people to do things’ — to run good ethics committees, to encourage ethics activity in their institutions, to educate researchers in ethics, to protect human subjects — reveals, with a little shift, a double sided question.
First, how to get people, to do things. Ethics appears as a solution to a failed science, an ethics of
‘research’ whose practitioners, after Nuremberg, cannot be entrusted to their professions or consciences. These rules made by persons, it was hoped, would make persons made by rules.
However, it would not do to follow what Laidlaw (2002), Zigon (2006) and Robbins (2004) all attribute to a Durkheimian legacy: a reduction of morality to social norms. In distinguishing the work of FERCAP from bioethics, my interviewees did remark that the guidelines were ‘already there,‘ that the work they did was implementation, or operationalisation. Nonetheless, in attention to the language of training sessions and conference I am brought to ask how and why actors are invited to ‘make themselves into subjects of esteemed qualities or kinds’ (Faubion 2011:
3), how an ethics of the self intertwines with the ethics of review committees and trials. FERCAP itself asks how and why people behave the way they do (cf. Howell 1997; Malinowski 1926); the form of its capacity building exercises gives an insight into what people are imagined to be, in order that they can be changed, inspired and governed. My attention to the making of particular types of people is one part of showing, as Shapin does ‘how and why people and their virtues matter to the making and the authority of late modern bodies of technological knowledge’ (2008:3). He points out that in order to give an account of why personal virtue “still matters” he must also give an account of “why it is so widely said that it does not matter” (2008:13).
There is also the question of the kind of governance which FERCAP’s implementation of the SIDCER recognition program establishes. Are we looking at members of an organisation concerned with standards for the collective sentiment of protecting the human subject, or with the trials and research that SIDCER recognition could bring? Though the answer cannot be exclusively either, in this question we see rewritten a division between Malinowski and Radcliffe-Brown, who, Kuper writes, did not agree on sociological theory: ‘In his Essay on the Gift, in 1925, Mauss rewrote the kula ethnography in terms of Durkheimian collective sentiments. Malinowski in turn recast reciprocity as a matter of enlightened self-interest’ (2005:48). Cristina’s response to the question posed by the American academic in the opening vignette of this thesis — No, we don’t have the kind of systems or law that you’d recognise but we have ‘moral force‘ — recalls debates common in 20th century anthropology, as researchers interested in the dispute settlement and judicial systems of peoples they studied focused on principles of social control (Colson 1953) to discern how societies were governed.
With this, we move to the second side of the question: ‘how to get people to do things’, with the emphasis on getting them to do something, what we tend to call governance. ‘Late modernity’, write Shapin, ‘is supposedly marked by the extension of impersonal means of control to ever new domains, ultimately bringing all of social life under the sway of impersonal reason’ (2008:9). He remarks that
[i]t would be convenient to be able to tell a story of linear transition from [...] a sacred to a secular world, from trust-in-familiar-people to anonymous trust in impersonal standards and faceless institutions; from virtue to institutional control as a solution to problems of credibility and authority (2008:17).
However, as his circumspect tone indicates, this is not the case. In the chapters that follow I explore FERCAP’s standardisation agenda (Chapters 2, 3 and 6) alongside its reliance on ‘familiar people,’ asking how the two successfully coexist. This is not to say the FERCAP program has no struggles with authority. Entities such as FERCAP, non-governmental organisations between government and state, prompt questions about their sources of legitimacy (Keck and Sikkink 1998; Irwin 2008). They also prompt contestation over epistemic authority: who should set the standards, should they enable or constrain? Who should do this kind of recognition? While it has come to be agreed that governance over biomedical research is needed, the question of how it can be both effected and enforced varies. I explore the variety of answers given in the text.
Where is Ethics?
Where does one look for ethics? Who decides? By what criteria? Ong (2010: 13), suggests that [i]nstead of proceeding from a position of moral certitude to make judgements about particular ethnographic situations or seek to remedy them according to a universal set of ethics, an anthropology of ethics is necessarily about locating ethical practices, that is, tracking ethical configurations where “ethicalizing” processes and decisions take place.
Capacity building in research ethics — “ethicalizing” — takes place in rooms, around tables. The thesis examines these sites. It also considers the form of the committee, an ‘ethical configuration.’
What kind of politics inhere in it; what does it assume? The ethics committee is one of several contemporary spaces of deliberation into which ‘society’ is thought to enter, converse with, and engage science. Consensus conferences, round tables and public consultations are, argues Weingart (2008), the outcome of academic debates on the democratization of expertise. He cites the House of Lords Science and Society report (2000) which followed the UK’s BSE (mad cow disease) crisis, and the European Union’s white paper on democratic governance (2001). In light of these developments, Strathern (2005) cautions us against the abstraction of ‘society’, arguing
that it produces the concept of ‘science’ in ‘contradistinction to itself,’ de-socialising ‘science and technology’ in the process:
it encourages the idea that all ‘science’ need now is that it does useful things ‘for society.’ It could even prompt people to equate ethics committees and government commissions with society’s studied opinion. But above all, the invocation of ‘society’ summons the fragility of measurement: what will count as society, whose views will figure? (Strathern 2005b: 476)
The question of who counts is central to this inquiry. I reflect on the convenience of reifications such as society and the individual, the political tools of science, and the problems to which audit and oversight appear as solutions. Many research ethics committees in developing countries work in the absence of national ethics committees. Governments and scientists do not conduct the kind of public consultation or polls with which analysts of Euro-American science studies are becoming familiar (Nowotny et al 2001). I pay attention to what and how knowledge are displayed in the committee, the articulation of these positions, and the making of the ‘view’ from which members of an ethics committee can speak.
In asking where ethics is located, the question of where differences are located also arises.
Difference is a problematic category for bioethics: the Nuffield Council on Bioethics recommends a ‘duty of respect’ which ‘implies a duty to be sensitive to other cultures’ (2002:50). Simpson (2004a, 2004b) asks ‘to which cultural differences’ is this sensitivity to be directed? FERCAP works between countries pre-conceived as ‘different’ through their legal systems, research cultures and ‘cultures’. How are these difference managed (Wastell 2001) by this system–in–the making?
FERCAP must manage the central authoritative texts of GCP, WHO, CIOMS, etc, and at the same time, strive to honour sensitivity to ‘local difference’ (Nuffield 2002). FERCAP comes to be a context in which these things can be worked out, and how it does so is an ethnographic question I explore in this thesis.
Methods
This was fieldwork organised around the aeroplane, as I traveled to the various sites of FERCAP activity in the region. Planning from a calendar .pdf13 emailed to me by Cristina, I spent 4 months
13 Portable Document Format is a formal open standard known as ISO 32000, viewable on any platform.
Figure 7: Fieldwork Map, March 2009 – November 2010.
at the offices of the Colombo Medical Faculty Ethics Review committee, Sri Lanka and for each of the subsequent 15 committees with which I had contact, either observed their activities through the FERCAP Survey, met members at trainings or solicited interviews through contacts.
The field based research consisted of six months in Sri Lanka (March – July 2009, February – March and May 2010) resulting in contact with four committees; a month in Thailand (March – April 2010) largely interview and workshop based, contact with one committee; 3 weeks in the Philippines (April 2010) contact with three committees; 3 weeks in Taiwan (May – June 2010) contact with four committees; and just over a month in China (June 2010 and November 2010) contact with three committees (Figure 7). In arranging the time by country, the impression is one of disjointedness. While there was a great deal of unfamiliarity over the course of the ‘following’, my facility with the activities I was observing and participating increased. I met the same people over and again. Interactions with one key informant ran like this: March 2009 Colombo;
November 2009 Chiang Mai; March 2010 Bangkok; April 2010 Manila; June 2010 Beijing, Shanghai and Guangzhou, November 2010 Shanghai. We became more familiar with one another, and as I trained, I saw trainings, surveys and lectures repeated. A core group of four or five members of FERCAP showed up regularly at events, trainings and meetings but I knew people as they knew one another — through surveys, trainings, conferences. At certain points, this forced me to raise a question much like that which Candea asks for his Corsican village: ‘how is one to ground one’s knowledge in intimacy, when people’s intimacies only stretch so far?’ (2010:
22).
As a participant observer, I was a trainee, a Surveyor, an interviewer. It was requested that, as an observer of the workings of the network, I provide a form of feedback. I produced a commentary on some of the metaphors the group used to describe themselves (Douglas-Jones 2011). Thus, in a study of systems oriented towards improvement, and while immersed in the participant observation role of surveying and critically assessing ethics review committees, one of the difficulties, perhaps, was that of being an ethnographer, not an auditor. Understanding how the critical angle was prized open and how critique was formulated revealed a great deal more about the relationships between surveyors and surveyed than simply coming to a detailed understanding of the process of critique. As with anthropologists who work with development, there was a double-think required to get around the promise of the ‘good’ contained within promise of the capacity building sessions in which I participated. Improving the system in the hope of providing
‘better human subject protection’ is difficult to disagree with, but it was not disagreement that would — in the end — allow an externality to the rhetoric. While the role of auditor or surveyor
wonderfully naturalised extensive note-taking, as Strathern pithily put it, ‘ethnography does not measure accomplishments in the hopes of improving the system’ (2003a: 309).
While the scrutiny of audit provided a foil for ethnographic attention (as long as I could divine the difference), my data collection seemed to resemble the increasing multi-sitedness of clinical trials. Similarly, collaboration as a problematic was written into this research from the outset. Cast as a research topic, methodology, and the form of the ISBC project’s operations, it coloured both practice and analysis, a concept in vogue both in the anthropological academy (Marcus 2008, Lassiter 2005, 2008, Reddy 2008, Holmes and Marcus 2008, Lowe 2007, Konrad 2012) and within the bioscientific world (Glasner 1996, Hackett 2005, Royal Society 2011, Wagner 2001, 2002a, 2002b, Parker et al. 2010, Halliday 2010, Hackett 2005). The way in which the project was set up might lead one to a conclusion that the whole picture gathered by nine anthropologists would (necessarily) be greater, clearer, more accurate, than the picture gathered by one alone, were she to set out on the same task. As the collaborators in the Matsutake Worlds Research Group (MWRG hereafter) confirm, collaboration in multi-sited research seems simple, to the point of obviousness:
To the extent that the sites are different from each other, expertise and commitment are
To the extent that the sites are different from each other, expertise and commitment are