Person:

Fullwiley, Duana

In this article, I call for enlarging the conceptual terrain for viewing local biological expressions of illness. To date, a specific DNA sequence pattern, called “the Senegalese sickle cell haplotype,” has enjoyed extraordinary purchase on explanations for why Senegalese people may live with a “milder” form of sickle cell anemia when compared with other African populations. I argue, however, that “mild sickle cell” in Senegal emerges as a lived construct through a constitutive bond of biology, economy, and kinship. I show how patients’ enactments of biological difference are situated within larger informal economies and North–South donor priorities for health. In the absence of state funding to address patients’ needs, Senegalese sicklers create networks of care, health, and normalcy by drawing on Wolof idioms of “shared blood” that come to life in ways beyond metaphor. Their biosocial kinships result in therapeutic economies that restructure valuations of sickle cell despite serious medical constraints in this global context.

This paper presents an ethnographic case study of the use of race in two interconnected laboratories of medical genetics. Specifically, it examines how researchers committed to reducing health disparities in Latinos with asthma advance hypotheses and structure research to show that relative frequencies of genetic markers characterize commonly understood groupings of race. They do this first by unapologetically advancing the idea that peoples whom they take to be of the 'Old World', or ;'Africans', 'Europeans', 'East Asians', and 'Native Americans', can serve as putatively pure reference populations against which genetic risk for common diseases such as asthma can be calculated for those in the 'New World'. Technologically, they deploy a tool called ancestry informative markers (AIMs), which are a collection of genetic sequence variants said to differ in present-day West Africans, East Asians, Europeans, and (ideally Pre-Columbian) Native Americans. I argue that this technology, compelling as it may be to a range of actors who span the political spectrum, is, at base, designed to bring about a correspondence of familiar ideas of race and supposed socially neutral DNA. This correspondence happens, in part, as the scientists in question often bracket the environment while privileging racialized genetic variance as the primary source of health disparities for common disease, in this case between Mexicans and Puerto Ricans with asthma. With their various collaborators, these scientists represent a growing movement within medical genetics to re-consider race and 'racial admixture' as biogenetically valid points of departure. Furthermore, many actors at the center of this ethnography focus on race as a function of their personal identity politics as scientists of color. This to say, they are driven not by racist notions of human difference, but by a commitment to reduce health disparities and to include 'their' communities in what they describe as the 'genetic revolution'.

Commercially available tests of genetic ancestry have significant scientific limitations, but are serious matters for many test-takers.

Many researchers working in the field of human genetics in the United States have been caught between two seemingly competing messages with regard to racial categories and genetic difference. As the human genome was mapped in 2000, Francis Collins, the head of the publicly funded project, together with his privately funded rival, announced that humans were 99.9 percent the same at the level of their genome. That same year, the National Institutes of Health (NIH) began a research program on pharmacogenetics that would exploit the .01 percent of human genetic difference, increasingly understood in racial terms, to advance the field of pharmacy. First, this article addresses Collins’ summary of what he called the ‘vigorous debate’ on the relationship between race and genetics in the open-access special issue of Nature Genetics entitled ‘Genetics for the Human Race’ in 2004. Second, it examines the most vexed (if not always openly stated) issue at stake in the debate: that many geneticists today work with the assumption that human biology differs by race as it is conceived through American census categories. It then presents interviews with researchers in two collaborating US laboratories who collect and organize DNA by American notions of ‘race/ethnicity’ and assume that US race categories of classification largely traduce human biogenetic difference. It concludes that race is a practical and conceptual tool whose utility and function is often taken for granted rather than rigorously assessed and that ‘rational medicine’ cannot precede a rational approach to addressing the nature of racial disparities, difference and inequality in health and society more broadly.

Many physicians in Senegal and France, where most Senegalese sickle cell specialists are partially trained, assume that genetic testing that could imply selective abortion for people with sickle cell would run counter to the religious and cultural ethics of people living in Dakar. Senegalese affected by this genetic disease, however, often cite ‘‘traditional’’ rationales to indicate why such testing, if offered, might appeal to them. The reluctance of medical practitioners to entertain such testing technologies for their patients evinces a protectionist attitude toward care—an attitude that emerges within a context in which family planning and a blind concentration on HIV=AIDS have created a public health system that completely overlooks sickle cell anemia. This discriminate biopower leaves everyday biopolitics largely in the hands of families faced with this disease. It falls to them to pragmatically calculate the value that genetic testing may, or may not, hold for their own lives.