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

Introduction: Vernaculars in Race and Disease Science

Introduction Vernaculars in Race and Disease Science The current search for a genetic basis for common illnesses—for example, diabetes, asthma, cancers, depression—is a focus on hereditary susceptibilities . The concept of “biological predispositions” competes with, and draws on, other ways of explaining disease, some more closely related (e.g., characteristics of the blood,“family history,” fate) than others (e.g., melancholia, pollution, nutrition, sin). This mix of old and new nosologies is becoming increasingly visible today, as medical geneticists employ racial categories— for example, African American, Hispanic, Caucasian—to make biological links between particular populations and diseases. The terms for these racial categories carry multiple meanings, as do cognate classes including disease categories, medications, and diagnostic techniques, a heterogeneity often masked in the emphasis on the future of medicine. This multivalence is playing an important part in the development of biomedicine today. As scientists, physicians, and patients interact, creating a race-based science of disease, they are constantly translating contrasting approaches to health, ethnicity , and expertise to make the practices of others meaningful. These ambiguities make a race-based science of disease both possible and unstable. The following pages closely explore a race-based asthma genetics study to see how this science is binding together official and vernacular traditions of identifying ethnic groups and multiple meanings of common illnesses . The study, conducted by a team of researchers from Johns Hopkins 2 BIOMEDICAL AMBIGUITY University, was one of six taking place in the eastern Caribbean country of Barbados, a small island with a population of 269,000. Like all such projects, it brought together an otherwise unlikely gathering: the genetics researchers who design and conduct the studies; Barbadian government officials who work to attract international biomedical research; Barbadian medical practitioners and researchers who facilitate data collection; and the families who participate in the study. Through ethnographic fieldwork, I explored what involvement in the research meant to these groups, and the medical and racial categories created through their interaction. This fieldwork revealed foundational contradictions by which those involved both facilitated and potentially undermine the biomedical research program. This book, then, depicts biomedical research through interviews and ethnographic observations among the multifaceted groups that interact to create such research. The story compels a rethinking of the biomedical stabilization of race and enigmatic illnesses like asthma. I follow ambiguities by drawing attention to desires, reversals, and contradictory motives—all of which are an integral part of medical science, while often suppressed in representing this science. Giving race and asthma concrete biomedical meaning relies on their historical variability: meanings of race, genes, and asthma are all negotiated in the context of ideas about ethnicity, public health, heredity, and family narratives. The international biomedical research on race and disease is premised on multiple meanings of illness,vernaculars of ethnicity, and national political positions; reciprocally, new medical techniques are produced as this research is integrated into government policies, medical practices, and family identities in surprising ways. The U.S. genomic science occurring in Barbados shows that race-disease connections occurring through biomedical research do not remain on a fixed trajectory; instead they are born with and live a cultural life, creating new regimes of care, state interventions,and unexpected medical diagnostics.This vernacular of medical meanings is integral to the making and use of international genetics of race and disease: its ambiguity allows medical research to have different significance to a postcolonial government, a burdened medical practice, and families. Variable Asthma Asthma is an enigmatic condition in American medicine. According to the National Heart, Lung, and Blood Institute (NHLBI), asthma prevalence in the United States increased 75 percent between 1980 and 1994 (NAEPP n.d.). Other research suggests that an increase has occurred worldwide, particularly in urban areas and countries undergoing rapid development. These INTRODUCTION 3 statistics have elicited various explanations. One of the most common is the “hygiene hypothesis” in which more modern homes and lifestyles result in lower exposure to infections and bacteria at a young age, and a consequent oversensitization to allergens,resulting in asthma.An alternative explanation implicates the increase in pollution associated with modernization. Some epidemiologists argue that increased education, funding, and consequent awareness among both medical practitioners and the public have resulted in a higher rate of diagnosis, not a higher prevalence. A similar explanation notes the expansion of the category of asthma through newer diagnostic techniques such as assessing the response to medications. These...