«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Ethical considerations and consent Last but not least, this research required careful ethical consideration. I was conducting research with vulnerable people – patients with diabetes (who, as it turned out, often also suffered from depression) and migrants with low educational level and limited German language skills. This raised concerns about consent and my responsibilities as a researcher for my research participants. Usually such questions are addressed by an ethics committee that scrutinises the value and conduct of a research, but at my field site such institutionalised structures did not exist. Instead of centralised ethics committees, German hospitals run their own ethics boards that decide over research, and family doctors follow general ethical guidelines of patient data confidentiality set by the Medical Council. This means that they would approach their patients on the researcher’s behalf and only establish the contact in case a patient expresses his interest in participating. I was uncomfortable with such quite grey areas of authoritative dependencies and decided to reach patients only through the self-help group where people could make contact with me in case of interest rather than the other way round. Ethics committees are missing at German universities and research foundations.
Although local ethics institutions were absent, my research was cleared by the School of Social and Political Studies (SSPS) Research and Research Ethics Committee of The University of Edinburgh, and I decided to follow the American Anthropological Association Code of Ethics. However, obtaining the informed consent as my responsibility towards my research participants was a difficult exercise. I questioned what kind of truly informed consent could be possible and in what way I had to protect their interest. In course of the fieldwork, though, I began to revise my ideas of consent and started to wonder if I assumed inertness and vulnerability too readily. As I explored the patients’ day-to-day responses to illness experience I discovered their creativeness and agency. Neither victims of their illness nor blind mimics of biomedical healthcare paradigms, they manoeuvred diabetes management recommendations with their social lives and individual bodies. Rather than understanding diabetes control in terms of Foucault’s (1998) “bio-power”, subsequent analysis was guided by exploring “bio-tactics” based on De Certeau’s (1984) concept of “tactics in everyday life”.18 The concept of consent could be brought into consideration here. One could argue that my research participants indeed consented to dominant illness management advice, as they could experience how their bodies “did better”, “felt better” if changing their lives in these ways. The execution of what they consented to then laid in their own hands, negotiating the practicality in their social lives.
Similarly, appreciating my research interest roughly as “trying to understand their experiences”, they had a very clear idea as to what they would like to share with me (sometimes telling me, that this is not information for my research), when they would like to invite me, and when I was not welcome to be present. Some had experience of telling their life stories to journalists, the self-help group leader and many doctors were quite media-savvy, and they discussed the extent of their involvement in my research. For example, initially agreeing to show me their group statistics, the self-help group withdrew this offer later but shared their many photos that documented their events with me. All research participants expressed their gratitude and curiosity that someone would be interested in telling a more in-depth story about their experiences. Having said this, I would nonetheless challenge the idea that they could make an informed choice of participation, for example, having never read an ethnography and not understanding the scale or rather limited readership of a doctoral thesis. I fear that most, with a few exceptions, believed – despite my efforts of denial – that my PhD thesis would eventually end up as a widely distributed publication or give them some form of recognition and attention.
My ethical responsibility of dissemination beyond disciplinary boundaries will be taken up in the final conclusion of the thesis.
Indeed, this did not solve all conundrums. Getting signed consent forms from my research participants as a potential requirement of publishers seemed a daunting exercise. Above all, while my presence seemed accepted, the idea of handing me (or anyone else for that matter) a signature under a document seemed an odd or even suspicious idea. This was understood and mistrusted as obscure German bureaucracy. It seems ironic that such requirements of informed consent are associated with German officialdom when Germany has such a poor record of ethical
18 See the next Chapter 3.1.
research scrutiny; not only are ethics committees missing in research institutions but even there exists no ethics code for anthropologists by the Germany Anthropological Society (DGV). When I discussed the issue signed consent, the general question was what this signature would be for. Many felt that they would “sign away” their rights rather than gain rights with their signature. I had to agree that this seemed the wrong way around, and the members of the self-help group and I negotiated what consent meant to them and in which way this could be formalised that they were comfortable with it. In the end, with the risk of not conforming to standardised ethical requirements, I gave my signature on a document which I handed to them. I stated to guarantee their anonymity and treat their information and data (such as photos) with confidentiality and respect.
Chapter 3: Bio-anthropologies: theoretical framework
As a final part of this introductory section follows an overview of the body of literature in which I placed my research findings. Locating this thesis within medical anthropology rather than, perhaps, an anthropology of migration or diaspora should lay emphasis on experiences and practices of illness and body management.
Migration and marginality should serve to focus the lens on how such experiences can be shaped in particular social scapes and interactions. At the centre of this thesis, therefore, is type 2 diabetes. Type 2 diabetes can mean many things. It is a malfunctioning pancreas, a body overwhelmed by high glucose concentration in its blood and organs that are damaged as a consequence. Type 2 diabetes is a range of faulty genes that can lie dormant until too indulgent food habits have challenged the body enough to make such defect relevant. Type 2 diabetes is a biomedical disease category that describes a metabolic disorder; although under different names, it has been known for thousands of years and its description can be found in ancient Greek and Sanskrit medical texts (Müller 1989; Schadewaldt 1989). Today diabetes is frequently part of “pop health” media coverage, usually mentioned in the same breath with escalating obesity rates. Type 2 diabetes also means a chronically ill life, an immediate physical, profoundly emotional and inherently social experience;
experienced by those who receive its diagnosis, those sharing their lives, and those engaging professionally with diabetes. In short, diabetes is sweet blood and strained organs, faulty genes and a scientific medical category; it is a personal embodied and emotional lived experience of facing a life that requires the body to be controlled, and a collective social and societal experience. Neither is diabetes a mere biological entity, a scientific fact, nor can one reduce diabetes to be a social construct perpetuated by media coverage and public health campaigns that blames individuals or society of indulgence.
Social anthropological enquiry tends to focus on illness as an experience of suffering, the impact on social lives and roles and how it is dealt with by individuals or society. Medical anthropologists investigate sickness, medicines and medical systems. The focus, however, has widened and a renaming of this branch to the anthropology of health and illness aims to disentangle automatic connections of illness and medicine and explore broader contexts and influences. Part of such development is also to discard a distinction of illness, as the anthropologically interesting lay experience, and disease, as the biomedical category diagnosed by health professionals (Eisenberg 1977; Ecks 2008: 87). The emergent science and technology studies found a special interest in unpacking such formerly black-boxed categories and the spaces in which they were formed and negotiated (Lock, Young and Cambrosio 2000). Furthermore, such studies started to explore experiences of bodies re-evaluated or even modified by new scientific technologies (e.g. Rabinow 1996b). Biology was no longer overlooked, ignored, left aside or dismissed. The following chapter should serve as an introduction to a range of “bio-anthropologies” and outline the theoretical framework of this thesis.
Most intriguing of such bio-contributions is the idea of biosociality. Rabinow (1996a) imagined – although never empirically explored – how biology, specifically new biologies created by biotechnology, could create social groups. In this thesis, there is the patient group of Turkish Berliners with diabetes, evoked by health professionals and activists in its immense size and challenge. Some of these patients are formally organised in a self-help group. As this is an unusual story of biosociality, one of marginalised people and fairly “low-tech”, this chapter will introduce previous accounts of biosociality and propose to widen the focus. First another “bio-literature” will be addressed. Michel Foucault was one of the first and most influential scholars to introduce “bio” into social theory. Perhaps most dominant and certainly most often adopted in numerous anthropological analyses of this kind is Foucault’s bio-power (1998 ). The rigorous lifestyle disciplines of people with diabetes invites consideration of such institutionalised forms of bodily control as well as Foucault’s (1990 ) later work on self-care (e.g. Ferzacca 2000). Here I am going to introduce his legacy in health research and their limitations in understanding contemporary experiences of health maintenance and self-care practices.
3.1 Beyond bio-power
Bio-power The Foucauldian “bio” is concerned with the body and life. Michel Foucault’s concept of bio-power (1998 ) envisions lives and bodies monitored and controlled in increasingly complex nation states that require more subtle and dispersed forms of power than the corporal punishment to which the sovereign powers of earlier centuries resorted. Governmentality, as he later coined this, is a form or art to govern the population with more than mere politics and laws but to assert control over populations and bodies through various disperse disciplines (Foucault 1991b, 2000: 201ff). Foucault’s legacy is immense and transcends disciplines and subject interests. For some, his later work on self-care seems more relevant or radical in thought, in which he imagined people with the freedom to engage in “technologies of the self” beyond bio-power (1997). This thesis addresses both, considering whether diabetes control can be understood as forms of bio-power that people experience or as technologies of the self that people practice autonomously, and asking if Foucault and his descendants raise relevant questions to address the experiences told in this ethnography.
Foucault’s famous works are histories (or what he called archaeologies and later, more Nietzschean, geneaologies) of evolving state power and emerging institutions that had life and the body as their central focus. His seminal Madness and Civilization (1989 ) is about the mad body and how it is controlled, and this work had a profound impact on the anti-psychiatry movement. Moving on to the generally ill, Foucault described the Birth of the Clinic (1986 ) as the beginnings of institutionalised medicine and the medical profession. Most notably, this work is cited for Foucault’s notion of the “clinical gaze” (regard) that he conceptualised as an institutionalised and penetrating gaze of the medic on the patient body. This includes the technical, diagnostic, examining and intrusive gaze into the body as well as the administrative, monitoring, measuring and controlling gaze on health and illness states. Foucault then further developed these ideas of watching the – here criminal – body in his history of the prison. Discipline and Punish (1991a ) starts with the graphic description of a brutal 18th century public torture and execution scene. Foucault traced the historic development of sovereign power that inflicts such violent acts on the body to punish a crime, to the institutional, modern form of punishment that aims to discipline and reform the criminal in prisons. The body remains at the centre of punishment but its disciplining is achieved in form of constant surveillance. The Panopticon, the central watchtower that enables constant surveillance of the criminal, represents this idea of discipline (surveillance) and docile bodies that can be moulded as a result of internalising this discipline. In short, Foucault described how power transformed historically from a brutal force to more covert ways, aiming to control the body rather than destroying it.
This notion of controlling life and bodies was further developed in Foucault’s History of Sexuality (Volume I: The will to knowledge, 1998 ) and his concept of bio-power. Again, Foucault scrutinised the emergent, enlightened modern state and its institutions – this time in light of a history of sexuality – and concluded that changing and expanding demographics required a more administrative and bureaucratic approach to govern the population than a direct rule of power. Placing the discipline of bodies and the regulation of the population at the core of power, institutions emerged. Military institutions, schools, universities, clinics would exert such discipline on individual bodies and demographic statistics were gathered that monitored the population in birth and mortality rates.