Biomedical Ambiguity: Race, Asthma, and the Contested Meaning of Genetic Research in the Caribbean

9. Biomedical and Anthropological Excesses

Unlikely Genetics In the extensive conversations I had with families about dust, the category had a particularly vague valence. Early in my fieldwork, I continually tried to reduce this ambiguity by asking people to tell me the one or several components that make up this dust. I failed, and only belatedly came to realize that this vagueness was integral to the concept. Asthma specialists and researchers in Barbados offered several competing definitions: the sands and allergens brought from the Sahara by the winds; the exhaust from the increased automobile use; the airborne debris produced by roadwork; finally , there was brief mention made of the soil being dustier as a result of erosion and damage caused by the economic reliance on sugar cane. However , among Barbadians not involved in medicine or research that I spoke with, the ambiguity of dust was not due to varying definitions, but rather a fundamental slippage in the category. Such vagueness made the category usable for multiple criticisms. Cathy and Diane Boxer discussed the causes of asthma in Barbados with their mother: Cathy: I think it is the air too! Because how can—[indicating her mother] you are an adult! Like my mother now, you started wheezing now, how? Mother: A couple of years ago. Chapter 9 Biomedical and Anthropological Excesses 184 BIOMEDICAL AMBIGUITY Cathy: A couple of years ago, in your forties, right? Mother: I was like in my late thirties, in my thirties, the dust. Cathy: Exactly, right, and that never used to affect her before. Mother: Right. Cathy: To me it’s more than just— Mother: It’s the dust and smoke— Cathy: It’s the atmosphere, man, the atmosphere is dirty—. Diane: It’s the atmosphere change, a definite atmosphere change. Mother: I feel it is more chemicals and the carbon monoxide. Cathy: Exactly. The air is just not clean. You know, sometimes you can actually feel yourself catching an asthma attack just being outside in the open! You can smell things that make you feel yourself short of breath. Mother: You don’t have to exert yourself. This integral vagueness is what allows dust to be a source of boundaries between pollution and purity (see Douglas 1966) in changes wrought by modernization, industrialization, and community practices. My claim is that this contradictory character is also found in the medical objects I have explored here. Race in current biomedicine has a basic ambiguity that allows the category to operate differently in different contexts . The urgency of research on race and disease, the moral and market pressure to address disparities and minority populations, results in a kind of expedient pragmatic approach to race in biomedicine: multiple criteria are considered independently sufficient for categorization. Self-identification, inferring ancestry, parental identification, country of origin, and current geographic location are each used as diagnostic of race, at times interchangeably . Asthma in biomedicine is similarly variably defined: it is diagnosable by the patient’s response to medication or to allergens, or by the patient’s history, with severity measured by the number of emergency room visits, the amount of medication used, or the patient’s perspective. But where the vagueness of dust can be valued and accentuated in vernaculars , such contradictions are devalued and thereby often hidden in official discourses, like biomedicine and anthropology. This implied consistency that masks contradictions is found when biomedical technologies are used to provide specific measurements of variable objects, in what I have called “hyperdiagnostics.” Asthma is measured in numbers of eosinophils, total serum IgE levels, percentage of lung response to methacholine; the search for gene-race-disease links gives us numbers like the percentage of Caucasians with slow metabolizing gene variants. And these hyperdiagnoses reinforce each other, allowing ethnic correction BIOMEDICAL AND ANTHROPOLOGICAL EXCESSES 185 of lung response during spirometry, and correlation of asthma-associated genetic variants with percentage of African ancestry. Such diagnostics increasingly rely on divergent populations. With the focus on genomics, institutions like the FDA, NIH, and pharmaceutical companies are drawing biological links between disease populations. The pressure to address minorities, to find therapeutic markets, and to target and explain disparities, along with the increasing difficulty of conducting medical research on U.S. populations, results in expanded efforts to make biological links between populations in the United States and Western Europe with poorer countries. These projects often rely on local governments for access to patients, facilitation...