Papers by Duana Fullwiley
This essay outlines the emergence of a contemporary synthesis regarding racial thinking in geneti... more This essay outlines the emergence of a contemporary synthesis regarding racial thinking in genetic science and in society more broadly. A departure from what Julian Huxley in 1942 termed the “modern synthesis,” the contemporary version does not purport to leave race thinking behind in favor of evolution, population genetics, and population-based accounts of natural selection and human diversity. Specifically, the contemporary synthesis blends old concepts (such as that of pure human “types,” located within continental land masses) with new attitudes (democratic inclusion, multicultural diversity, and antiracism).
Through various examples (of ancestry testing, forensics, and science education), the essay shows how this new synthesis combines ideas about human biological difference that draw on measures of physical characteristics and human genetic material that are both race and population based, yet conflated. This specific amalgam allows old notions of racial types to thrive through conceptual framings that comprise ideas that were once imagined to have the potential to liberate society from racial thinking—and that today remain attached to ideas of progress. As an emergent dynamic, the contemporary synthesis holds the possibility of reinvigorating racism, while simultaneously possessing the potential to promote antiracist science education, disease awareness, and social justice efforts.
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Science, Oct 18, 2007
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This paper presents an ethnographic case study of the use of race in two interconnected laborator... more 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'.
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American Ethnologist, 2010
In this article, I call for enlarging the conceptual terrain for viewing local biological expres... more 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.
[biosociality, genetic causation, informal economies, kinship, Senegal, sickle cell, therapeutic economies.]
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PLoS Medicine, Sep 25, 2007
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Science, 2007
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Science as Culture, 2007
This essay examines racial thinking in the emergence and unfolding of pharmacogenetic science in ... more This essay examines racial thinking in the emergence and unfolding of pharmacogenetic science in the United States. It also looks at government funding structures for what is now called "precision medicine" to show how race thinking structures scientific sorting practices as concerns human DNA for medical genetics. It ends with a discussion of then Senator Obama's Personal Medicine Act of 2006 to offer some thoughts on how to move forward with conceptualizing human genetic diversity without falling into the facility of race thinking in genomic science.
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BioSocieties, 2007
In the medical literature in the United States and France, sickle cell trait (HbAS) is generally
... more In the medical literature in the United States and France, sickle cell trait (HbAS) is generally
described as a benign condition. Curiously, however, people in Dakar, Senegal, and women in particular,
complain of symptoms attributed to this trait, which most doctors in this part of West
Africa diagnose as a moderate form of sickle cell anemia—a professional tendency that is now
beginning to change. This article draws on ethnographic materials to understand Senegalese sickle
cell trait suffering as an instance of social suffering mediated not only through cultural and biological
forms, but also through cultural and biological ‘options’ to be sick. It examines the interplay
of social distresses caused by sickle cell trait, and disease, diagnoses. It concludes that suffering
attributed to sickle cell trait consists of a complex nexus marked by economic privations, social
practices that are specifically gendered as female, religious fatalism and various ecological and
environmental stressors. Theoretically, this article joins the concept of social suffering to that of
biosociality. The resultant assemblage is ‘biosocial suffering’ whereby women with sickle cell trait
articulate and manifest social and physical pains through the biological entity of this recessive
allele.
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Medical Anthropology: Cross-Cultural Studies in Health and Illness, 2004
Many physicians in Senegal and France, where most Senegalese sickle cell specialists are partiall... more 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.
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Sciences sociales et santé, 1998
La drépanocytose, la première maladie génétique à avoir été localisée au niveau moléculaire, a pe... more La drépanocytose, la première maladie génétique à avoir été localisée au niveau moléculaire, a pendant longtemps été perçue, aux Etats-Unis, comme une « maladie de noirs » circonscrite aux africains-américains.
A 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 une 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.
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BioSocieties, 2006
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This paper looks at DNA phenotyping, or "molecular photofitting," technology and assesses its use... more This paper looks at DNA phenotyping, or "molecular photofitting," technology and assesses its use value in legal proceedings. It argues that this technology, based on continental ancestry genetics, relies heavily on traditional Western notions of racial classification, which it takes as priors and which are embedded in its very structure.
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The British Journal of Sociology, Mar 2015
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Books by Duana Fullwiley
In the 1980s, a research team led by Parisian scientists identified several unique DNA sequ... more In the 1980s, a research team led by Parisian scientists identified several unique DNA sequences, or haplotypes, linked to sickle cell anemia in African populations. After casual observations of how patients managed this painful blood disorder, the researchers in question postulated that the Senegalese type was less severe. The Enculturated Gene traces how this genetic discourse has blotted from view the roles that Senegalese patients and doctors have played in making sickle cell "mild" in a social setting where public health priorities and economic austerity programs have forced people to improvise informal strategies of care.
Duana Fullwiley shows how geneticists, who were fixated on population differences, never investigated the various modalities of self-care that people developed in this context of biomedical scarcity, and how local doctors, confronted with dire cuts in Senegal's health sector, wittingly accepted the genetic prognosis of better-than-expected health outcomes. Unlike most genetic determinisms that highlight the absoluteness of disease, DNA haplotypes for sickle cell in Senegal did the opposite. As Fullwiley demonstrates, they allowed the condition to remain officially invisible, never to materialize as a health priority. At the same time, scientists' attribution of a less severe form of Senegalese sickle cell to isolated DNA sequences closed off other explanations of this population's measured biological success.
The Enculturated Gene reveals how the notion of an advantageous form of sickle cell in this part of West Africa has defined--and obscured--the nature of this illness in Senegal today.
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Book Reviews by Duana Fullwiley
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Scrambling for Africa: AIDS, expertise, and the rise of American global health science, by Johanna Tayloe Crane, Ithaca, NY, Cornell University Press, 2013, 224 pp., US$27.95 (paperback), ISBN 0801479177
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Book chapters in edited volumes by Duana Fullwiley
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Papers by Duana Fullwiley
Through various examples (of ancestry testing, forensics, and science education), the essay shows how this new synthesis combines ideas about human biological difference that draw on measures of physical characteristics and human genetic material that are both race and population based, yet conflated. This specific amalgam allows old notions of racial types to thrive through conceptual framings that comprise ideas that were once imagined to have the potential to liberate society from racial thinking—and that today remain attached to ideas of progress. As an emergent dynamic, the contemporary synthesis holds the possibility of reinvigorating racism, while simultaneously possessing the potential to promote antiracist science education, disease awareness, and social justice efforts.
[biosociality, genetic causation, informal economies, kinship, Senegal, sickle cell, therapeutic economies.]
described as a benign condition. Curiously, however, people in Dakar, Senegal, and women in particular,
complain of symptoms attributed to this trait, which most doctors in this part of West
Africa diagnose as a moderate form of sickle cell anemia—a professional tendency that is now
beginning to change. This article draws on ethnographic materials to understand Senegalese sickle
cell trait suffering as an instance of social suffering mediated not only through cultural and biological
forms, but also through cultural and biological ‘options’ to be sick. It examines the interplay
of social distresses caused by sickle cell trait, and disease, diagnoses. It concludes that suffering
attributed to sickle cell trait consists of a complex nexus marked by economic privations, social
practices that are specifically gendered as female, religious fatalism and various ecological and
environmental stressors. Theoretically, this article joins the concept of social suffering to that of
biosociality. The resultant assemblage is ‘biosocial suffering’ whereby women with sickle cell trait
articulate and manifest social and physical pains through the biological entity of this recessive
allele.
A 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 une 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.
Books by Duana Fullwiley
Duana Fullwiley shows how geneticists, who were fixated on population differences, never investigated the various modalities of self-care that people developed in this context of biomedical scarcity, and how local doctors, confronted with dire cuts in Senegal's health sector, wittingly accepted the genetic prognosis of better-than-expected health outcomes. Unlike most genetic determinisms that highlight the absoluteness of disease, DNA haplotypes for sickle cell in Senegal did the opposite. As Fullwiley demonstrates, they allowed the condition to remain officially invisible, never to materialize as a health priority. At the same time, scientists' attribution of a less severe form of Senegalese sickle cell to isolated DNA sequences closed off other explanations of this population's measured biological success.
The Enculturated Gene reveals how the notion of an advantageous form of sickle cell in this part of West Africa has defined--and obscured--the nature of this illness in Senegal today.
Book Reviews by Duana Fullwiley
Book chapters in edited volumes by Duana Fullwiley
Through various examples (of ancestry testing, forensics, and science education), the essay shows how this new synthesis combines ideas about human biological difference that draw on measures of physical characteristics and human genetic material that are both race and population based, yet conflated. This specific amalgam allows old notions of racial types to thrive through conceptual framings that comprise ideas that were once imagined to have the potential to liberate society from racial thinking—and that today remain attached to ideas of progress. As an emergent dynamic, the contemporary synthesis holds the possibility of reinvigorating racism, while simultaneously possessing the potential to promote antiracist science education, disease awareness, and social justice efforts.
[biosociality, genetic causation, informal economies, kinship, Senegal, sickle cell, therapeutic economies.]
described as a benign condition. Curiously, however, people in Dakar, Senegal, and women in particular,
complain of symptoms attributed to this trait, which most doctors in this part of West
Africa diagnose as a moderate form of sickle cell anemia—a professional tendency that is now
beginning to change. This article draws on ethnographic materials to understand Senegalese sickle
cell trait suffering as an instance of social suffering mediated not only through cultural and biological
forms, but also through cultural and biological ‘options’ to be sick. It examines the interplay
of social distresses caused by sickle cell trait, and disease, diagnoses. It concludes that suffering
attributed to sickle cell trait consists of a complex nexus marked by economic privations, social
practices that are specifically gendered as female, religious fatalism and various ecological and
environmental stressors. Theoretically, this article joins the concept of social suffering to that of
biosociality. The resultant assemblage is ‘biosocial suffering’ whereby women with sickle cell trait
articulate and manifest social and physical pains through the biological entity of this recessive
allele.
A 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 une 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.
Duana Fullwiley shows how geneticists, who were fixated on population differences, never investigated the various modalities of self-care that people developed in this context of biomedical scarcity, and how local doctors, confronted with dire cuts in Senegal's health sector, wittingly accepted the genetic prognosis of better-than-expected health outcomes. Unlike most genetic determinisms that highlight the absoluteness of disease, DNA haplotypes for sickle cell in Senegal did the opposite. As Fullwiley demonstrates, they allowed the condition to remain officially invisible, never to materialize as a health priority. At the same time, scientists' attribution of a less severe form of Senegalese sickle cell to isolated DNA sequences closed off other explanations of this population's measured biological success.
The Enculturated Gene reveals how the notion of an advantageous form of sickle cell in this part of West Africa has defined--and obscured--the nature of this illness in Senegal today.