46 research outputs found
Revaluating Genetic Causation: Biology, Economy, and Kinship in Dakar, Senegal
No full textIn 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.AnthropologyVersion of Recor
Race, biologie et maladie : la difficile organisation des patients atteints de drépanocytose aux États-Unis
No full textRace, biology and illness: the difficulty for patients suffering from sickle cell disease to organize themselves in the US
Sickle cell anemia, the first disease located at the molecular level in 1949, has long been understood as particular to african-americans. By examining the history of sickle cell disease in the US, this paper demonstrates the scientific and social production of sickle cell as a « black person's disease ». The multiple processes of group construction and identification which take race and disease into account will be examined. The interplay of race, biology, and disease in the case of individual african-americans who are not part of larger patient organizations can help to explain the experience of sickle cell as an element of a « minority's » reality in a society where differences made visible have resulted in discrimination of various forms.Résumé. La drépanocytose, la première maladie génétique à avoir été localisée au niveau moléculaire, a pendant longtemps été perçue, aux États-Unis, comme une « maladie de noirs » circonscrite aux africains-américains. À travers l'histoire américaine, sociale et scientifique, de la drépanocytose, cet article souligne le rôle joué conjointement par la race et la maladie dans la construction et dans l'identification du groupe des patients. Les interactions entre race, biologie et maladie contribuent à expliquer comment l'expérience de la drépanocytose est devenue un élément constitutif d'une minorité dans une société où les différences alimentent des pratiques discriminatoires. L'article explique ainsi pourquoi les africains-américains atteints de drépanocytose ne sont pas activement engagés dans des associations de malades.Raza, biología y enfermedad : la difícil organización de los pacientes afectados por la drepanocitosis en los Estados Unidos
La drepanocitosis, primera enfermedad genética que ha sido localizada a nivel molecular, fue percibida durante mucho tiempo en los Estados Unidos como una « enfermedad de negros », circunscnta a los afro-americanos. A través de la historia social y cientifica de la drepanocitosis en los Estados Unidos, este artículo subraya el papel jugado conjuntamente por la pza y la enfermedad en la construcción y en la identificación del grupo de pacientes. Las interacciones entre raza, biología y enfermedad contribuyen a explicar de que manera la experiencia de la drepanocitosis se ha convertido en un elemento constitutivo de una minoría en una sociedad donde las diferencias alimentan las prácticas descriminatorias. El artículo explica porque los afro-americanos afectados por la drepanocitosis no están activamente implicados en las asociaciones de pacientes.Fullwiley Duana. Race, biologie et maladie : la difficile organisation des patients atteints de drépanocytose aux États-Unis. In: Sciences sociales et santé. Volume 16, n°3, 1998. Les associations de malades : entre le marché, la science et la médecine, sous la direction de Doris Bonnet, Gérard de Pouvourville, Michel Callon et Vololona Rabeharisoa. pp. 129-158
The Biologistical Construction of Race: "Admixture" Technology and the New Genetic Medicine
No full textThis 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'.African and African American StudiesAnthropolog
Racial categories in medicine: a failure of evidence-based practice?
No full textThis Perspective discusses the
following new Essay published in
PLoS
Medicine:
Braun L, Fausto-Sterling A, Fullwiley
D, Hammonds EM, Nelson A, et al. (2007)
Racial categories in medical practice:
How useful are they? PLoS Med 4(9):
e271. doi:10.1371/journal.pmed.0040271
In this Essay, the authors address the
question of whether it is good medical
practice for physicians to “eyeball” a
patient’s race when assessing their
medical status
Healthy Sicklers with “Mild” Disease: Local Illness Affects and Population-Level Effects
No full textThis chapter focuses on how “sicklers” with varied economic situations and philosophical stances have succeeded in transforming their disease states into “health” statuses through a range of normalization techniques. As discussed in the previous chapter, clinicians and geneticists in Francophone sickle cell circles have adopted an optic of seeing African sicklers in terms of population groups that exhibit differences in disease expression. However, a key slippage occurs when scientists observe biological “outcomes” and assume, as a first response, that these should be attributed to distinct genetic sequences, which those same populations possess at different frequencies. This chapter thus examines how such scientific methods and assumptions may miss complex congeries of behaviors and relationships that influence people's disease experiences and biological expressions of sickle cell anemia.</p
The Work of Patient Advocacy
No full textThis chapter further explores issues of patients' tenacity to shape science, through advocacy on an international level, and investigates the ways that making a disease public in Africa often entails locating it within discourses of humanitarian “crisis,” emergency, and global health prioritization. In this way, tireless patient advocates of African origin living in France created the sickle cell disease umbrella organization of the International Organization for the Fight against Sickle Cell (OILD), which succeeded in getting sickle cell anemia the attention of the World Health Organization and the United Nations in 2008. The OILD's strategy of making sickle cell visible to these multilateral institutions consisted of linking the disease to other pressing global health problems for development through means that often deployed uncertainty as “data.”</p
The molecularization of race: institutionalizing human difference in pharmacogenetics practice
No full textRace, biologie et maladie : la difficile organisation des patients atteints de drépanocytose aux États-Unis
No full textRésumé. La drépanocytose, la première maladie génétique à avoir été localisée au niveau moléculaire, a pendant longtemps été perçue, aux États-Unis, comme une « maladie de noirs » circonscrite aux africains-américains. À travers l'histoire américaine, sociale et scientifique, de la drépanocytose, cet article souligne le rôle joué conjointement par la race et la maladie dans la construction et dans l'identification du groupe des patients. Les interactions entre race, biologie et maladie contribuent à expliquer comment l'expérience de la drépanocytose est devenue un élément constitutif d'une minorité dans une société où les différences alimentent des pratiques discriminatoires. L'article explique ainsi pourquoi les africains-américains atteints de drépanocytose ne sont pas activement engagés dans des associations de malades.</jats:p
