Participation of end users in decision-making on science is increasingly practiced, as witnessed by the growing body of scientific literature on case evaluations. In the biomedical field, however, end-user participation in decision-making is rare. Some scholars argue that because patients are stakeholders and relevant experts, they could also provide important contributions to decision-making within the field of biomedical research. But what strategies could be used to effectively implement patient participation in decision-making on biomedical research? In this article, we analyze strategies (...) for patient participation and conclude that these can hardly be regarded effective because they do not ensure patients' structural influence on decision-making. We identify obstacles for effective patient participation, which seem to reflect a resilience of the current biomedical decision-making network. We subsequently elaborate on the concept of transition management in the search for clues on how to breach this resilience and change the network toward the inclusion of patients. (shrink)

The scientific validity of racial categories has been the subject of debate among population geneticists, evolutionary biologists, and physical anthropologists for several decades. After World War II, the rejection of eugenics, which had supported sterilization laws and other destructive programs in the United States, generated a compelling critique of the biological basis of race. The classification of human beings into distinct biological “races” is a relatively recent invention propped up by deeply flawed evidence and historically providing the foundation of racist (...) ideology and inequities of power. Social scientists’ conclusion that race is socially constructed was confirmed by genomic studies of human variation, including the Human Genome Project, showing high levels of genetic similarity within the human species. Some scholars came to believe that the science of human genetic diversity would replace race as the preeminent means of grouping people for scientific purposes. (shrink)

How do institutions respond to expert contests over epistemologies of sex and gender? In this article, I consider how epistemological ascendancy in debates over the regulation of women athletes with high testosterone is established within a legal setting. Approaching regulation as an institutional act that defines forms of embodied difference, the legitimacy of which may be called into question, I show how sexed bodies are enacted through and as part of determinations of expertise. I focus on proceedings from 2015 when (...) the Court of Arbitration for Sport was asked to decide whether an Indian sprinter, Dutee Chand, could compete as a female athlete. Despite acknowledging that sexed bodies are unruly, the court ultimately endorsed the use of testosterone as seemingly essential to women’s athletic performance, thereby reasserting a two-category model of biological difference. The legitimacy of these regulatory efforts was established through the concurrent narrowing of expertise and the body, a process that is also revealed to be gendered. (shrink)

Anthropological insights into the use of race/ethnicity to explore genetic contributions to disparities in health were developed using in-depth qualitative interviews with editorial staff from nineteen genetics journals, focusing on the methodological and conceptual mechanisms required to make race/ethnicity a genetic variable. As such, these analyses explore how and why race/ethnicity comes to be used in the context of genetic research, set against the background of continuing critiques from anthropology and related human sciences that focus on the social construction, structural (...) correlates and limited genetic validity of racial/ethnic categories. The analyses demonstrate how these critiques have failed to engage geneticists, and how geneticists use a range of essentially cultural devices to protect and separate their use of race/ethnicity as a genetic construct from its use as a societal and social science resource. Given its multidisciplinary, biosocial nature and the cultural gaze of its ethnographic methodologies, anthropology is well placed to explore the cultural separation of science and society, and of natural and social science disciplines. Anthropological insights into the use of race/ethnicity to explore disparities in health suggest that moving beyond genetic explanations of innate difference might benefit from a more even-handed critique of how both the natural and social sciences tend to essentialize selective elements of race/ethnicity. Drawing on the example of HIV/AIDS, this paper demonstrates how public health has been undermined by the use of race/ethnicity as an analytical variable, both as a cipher for innate genetic differences in susceptibility and response to treatment, and in its use to identify at greater risk of becoming infected and infecting others. Clearly, a tendency for biological reductionism can place many biomedical issues beyond the scope of public health interventions, while socio-cultural essentialization has tended to stigmatize and the communities where these are more prevalent. (shrink)

Cluster headache is a notoriously painful and dramatic disorder. Unlike other pain disorders, which tend to affect women, cluster headache is thought to predominantly affect men. Drawing on ethnography, interviews with headache researchers, and an analysis of the medical literature, this article describes how this epidemiological “fact”—which recent research suggests may be overstated—has become the central clue used by researchers who study cluster headache, fundamentally shaping how they identify and talk about the disorder. Cluster headache presents an extreme case of (...) medicalized masculinity, magnifying the processes of gendering and bringing into relief features of the world whose routine operation we might otherwise overlook. (shrink)

This article examines how sex differentiation is invoked from body fat with a focus on how various monitoring devices participate in the construction of bodies. By using the concept of ‘local biologies’, denoting the linkage of the body to place with its local physical and social conditions, it argues against the ‘one-size-fits-all’ paradigm of modern medicine and critiques the mechanistic search for regularity in medical research. By looking at medical literature on obesity and how contemporary obesity researchers and clinicians link (...) body fat to sex, local biologies of bodies in a Swedish obesity clinic are contrasted to the universal biologies represented in medical research. The article also provides empirical examples of how fat has the potential to undermine traditional sex and gender binaries. (shrink)

This article addresses three questions concerning the legal regulation of the use of race as a category in biomedical research: how does the law currently encourage the use of race in biomedical research?; how might the existing legal framework constrain its use?; and what should be the law's approach to race-based biomedical research? It proposes a social justice approach that aims to promote racial equality by discouraging the use of “race” as a biological category while encouraging its use as a (...) socio-political category to understand and investigate ways to eliminate disparities in health status, access to health care, and medical treatment. (shrink)

Recent studies demonstrating epigenetic and developmental sensitivity to early environments, as exemplified by fields like the Developmental Origins of Health and Disease (DOHaD) and environmental epigenetics, are bringing new data and models to bear on debates about race, genetics, and society. Here, we first survey the historical prominence of models of environmental determinism in early formulations of racial thinking to illustrate how notions of direct environmental effects on bodies have been used to naturalize racial hierarchy and inequalities in the past. (...) Next, we conduct a scoping review of postgenomic work in environmental epigenetics and DOHaD that looks at the role of race/ethnicity in human health (2000–2021). Although there is substantial heterogeneity in how race is conceptualized and interpreted across studies, we observe practices that may unwittingly encourage typological thinking, including: using DNA methylation as a novel marker of racial classification; neglect of variation and reversibility within supposedly homogenous racial groups; and a tendency to label and reify whole groups as pathologized or impaired. Even in the very different politico-economic and epistemic context of contemporary postgenomic science, these trends echo deeply held beliefs in Western thinking which claimed that different environments shape different bodies and then used this logic to argue for essential differences between Europeans and non-Europeans. We conclude with a series of suggestions on interpreting and reporting findings in these fields that we feel will help researchers harness this work to benefit disadvantaged groups while avoiding the inadvertent dissemination of new and old forms of stigma or prejudice. (shrink)