This paper investigates continuities and changes in the definition of sickle cell disease in 1950s Brazil, taking into account that diseases have a history and are recognized as such according to the knowledge and perceptions available in a certain historical period and specific location. In the post-war era, new diagnostic tools, inheritance theories and, in particular, discussions on the concepts of race and racial relations, both nationally and internationally, were changing previous racialist and racist views. Nonetheless, the Brazilian medical interpretations (...) of sickle cell disease continued to racialize it and even use deep-rooted racist formulations to explain its symptoms or the existence of the disease. It is argued that the celebration of racial mixture and racial democracy might have concealed racist presumptions biasing the study of sickle cell disease. Although race as a biological concept gradually gave way to other genetic expressions, in Brazilian medical papers on sickle cell disease, race continued to influence the interpretation of the disease, along with the persistence of concepts of heredity through blood mixture. (shrink)

The historiography on the concept of race in the post-war sciences has focused predominantly on the UNESCO campaign against scientific racism and on the Anglo-American research community. By way of contrast, this article highlights the history of the concept of race from a thus far unexplored angle: from Swiss research centres and their global interconnections with racial researchers around the world. The article investigates how the acceptance, resonance, and prestige of racial research changed during the post-war years. It analyses what (...) resources could be mobilised that enabled researchers to carry out and continue scientific studies in the field of racial research or even to expand them and link them to new contexts. From this perspective, the article looks at the dynamics, openness, and contingency of the European post-war period, which was less stable, anti-racist, and spiritually renewed than retrospective success stories often suggest. The pronounced internationality of Swiss racial science and its close entanglement with the booming field of human genetics in the early 1950s point to the ambiguities of the period’s political and scientific development. I argue that the impact of post-war anti-racism on science was more limited than is frequently assumed: it did not drain the market for racial knowledge on a continent that clung to imperialism and was still shaped by racist violence. Only from the mid 1950s onwards did a series of unforeseen events and contingent shifts curtail the importance of the race concept in various sectors of the human sciences. (shrink)

The genome between socially constructed racial groups is 99.5%–99.9% identical; the 0.1%–0.5% variation between any two unrelated individuals is greatest between individuals in the same racial grou...

In the years following World War II, and increasingly during the 1960s and 1970s, professional scientific societies developed internal sub-committees to address the social implications of their scientific expertise. This article explores the early years of one such committee, the American Society of Human Genetics’ “Social Issues Committee,” founded in 1967. Although the committee’s name might suggest it was founded to increase the ASHG’s public and policy engagement, exploration of the committee’s early years reveals a more complicated reality. Affronted by (...) legislators’ recent unwillingness to seek the expert advice of human geneticists before adopting widespread neonatal screening programs for phenylketonuria, and feeling pressed to establish their relevance in an increasingly resource-scarce funding environment, committee members sought to increase the discipline’s expert authority. Painfully aware of controversy over abortion rights and haunted by the taint of the discipline’s eugenic past, however, the committee proceeded with great caution. Seeking to harness interest in and assert professional control over emerging techniques of genetic diagnosis, the committee strove to protect the society’s image by relegating ethical and policy questions about their use to the individual consciences of member scientists. It was not until 1973, after the committee’s modest success in organizing support for a retrospective public health study of PKU screening and following the legalization of abortion on demand, that the committee decided to take a more publicly engaged stance. (shrink)

This article uses Betty Friedan’s idiosyncratic invocations of heart disease in her work from the 1960s through the 1990s, as well as her autobiographical comments about it and her theory of the feminine mystique, to grapple with a feminist articulation of heart disease. Although this leading cause of death for women in industrialized countries has been peripheral to feminist health discourse and most women’s preoccupations, heart disease played an interesting narrative role in Friedan’s work and life. Drawing on Friedan’s unconventional (...) philosophy of health provides an opportunity to problematize health awareness and reconsider the role of disease and health in feminist critique more generally. As we try to understand gendered stories of disease that are emerging at the dawn of the 21st century, rereading Friedan can help illuminate the limits, possibilities and dangers of framing heart disease as a ‘women’s health issue’. (shrink)

The work of Bruno Latour has animated debates in sociology, anthropology and philosophy over several decades, while attracting criticisms of the ontological, epistemological and political implications of his focus on networks. This article takes a particular depth example – the case of the genetic condition of sickle cell – and, drawing upon anthropological, archaeological and sociological evidence of the sickle cell body in history, appraises early, and later, Latourian ideas. The article concludes that while methodologically useful in drawing attention to (...) the complicated links of humans, animals and things, concerns remain about Latourian ontological claims. Limitations include an empiricist failure to account for absence; an insufficiently robust conception of emergence; an unwarranted curtailment of counterfactual human knowledge; a lack of concern for serial ‘undeserving losers’; a tendency to accord excessive freedoms to human actors; and a lack of a conception of how things may be considered as agents rather than actants. (shrink)

If we want to understand the allure of pharmaceuticals, we need to look beyond both medical efficacy and profit motives. The success of a drug depends not only on these, but also on how it mobilizes prior conceptions of identity. The extent to which a drug is taken — or talked about — is related to commodity properties that exceed the physiological and the economic. In implicit contrast to the discussions of BiDil elsewhere in this collection, I explore how the (...) links between race and pharmaceuticals can be both unstable and generative even when the drug in question is old and generic. By attending closely to an encounter around generic thiazide outside of a medical or marketing context, I show that although pharmaceuticals can seem to rely on scientific data and marketing for their power, they are, in fact, also subject to claims on many more registers that cannot quite subsume or refute each other. (shrink)

This paper extends previous arguments against the assumption that the study of variation at the molecular level was instigated with a view to solving an internal conflict between the balance and classical schools of population genetics. It does so by focusing on the intersection of basic research in protein chemistry and the molecular approach to disease with the enactment of global health campaigns during the Cold War period. The paper connects advances in research on protein structure and function as reflected (...) in Christian Anfinsen’s The molecular basis of evolution, with a political reading of Emilé Zuckerkandl and Linus Pauling’s identification of molecular disease and evolution. Beyond atomic fallout, these advances constituted a rationale for the promotion of genetic surveys of human populations in the Third World, in connection with international health programs. Light is shed not only on the experimental roots of the molecular challenge but on the broader geopolitical context where the rising role of biomedicine and public health had an impact on evolutionary biology. (shrink)

(2013). Sickle Cell Disease and the “Difficult Patient” Conundrum. The American Journal of Bioethics: Vol. 13, No. 4, pp. 3-10. doi: 10.1080/15265161.2013.767954.