The Legal Transformation of Medicine: How Rules Work in the International World of HIV/AIDS
Author: Carol A. Heimer
This book project braids together investigations of three transformative events — the “legalization” and internationalization of medicine and the advent of HIV/AIDS — in a study of how laws, regulations and other rules are actually used in HIV research and treatment in the United States, Uganda, South Africa, and Thailand. It investigates what happens when laws, regulations, and guidelines, admittedly created with the best of intentions, are transported to new sites where they confront the realities of medical care, clinical research, and healthcare administration in developing countries — resource shortages, desperate patients, culturally-based miscommunications about ethical principles, discrepancies between first-world research designs and third-world research settings, as well as the mundane uncertainties typical of the encounter between medicine and human biology. Are rules used differently in countries such as Uganda and South Africa where AIDS really has reached epidemic proportions? Has government acknowledgement of the magnitude of the problem (in Uganda in contrast especially to South Africa) led to a different sort of regulation? Is the medical-legal regime modified when AIDS patients are disproportionately homosexuals or IV drug users (in America), rather than heterosexuals (in Uganda and South Africa) or sex workers (in Thailand)?
The project thus combines an examination of what has happened at the level of national and international policymaking with a close look at how the plethora of laws, regulations, rules, guidelines, codes, protocols, frameworks, and standard operating procedures actually affects how healthcare workers do their jobs. Interviews were conducted with major decision makers, and with writers and disseminators of regulations; ethnographic fieldwork was undertaken to learn about the daily work of HIV/AIDS treatment and research in five HIV clinics. Chosen to reflect important differences in prevalence rates, patient access to health insurance, distance between rule makers and rule followers, and government stances on HIV, the clinics under study were located in Chicago, Atlanta, Uganda (Kampala), Thailand (Bangkok), and South Africa (Durban). All of the clinics were engaged in both treatment and research and all had ties to universities. Fieldwork and interviews focused especially on three key types of rules — clinical guidelines, rules about the conduct of research, and administrative rules — asking, e.g., what people typically do when attempts to follow one set of rules are stymied by obligations to comply with another.
The task of the book (tentatively titled The Legal Transformation of Medicine: How Rules Work in the International World of HIV/AIDS) will be to transform these individual encounters with laws and rules into general knowledge. The book aims for a rich account of how the legal regulation of medicine has affected treatment and research, facilitating the rapid creation and diffusion of knowledge about HIV and shaping patterns of access to drugs. It will also assess which ways of formulating, adapting, and using prescriptive statements are especially likely to support or undermine responsibility. Only with this detailed analysis will we understand what the legalization of medicine really means.