Suchergebnisse

No theory of 'race' and ethnicity is without serious practical drawbacks for effecting selective screening for haemoglobin disorders. Universal screening raises issues about consent, resources and eugenicist representation of impairment. The latter requires that people living with haemoglobin disorders and their counsellors should be central to education of practitioners in this area. Practitioners should link explanations of the haemoglobin disorders to explorations with the client of their perception of their ethnic identity. This should address the dangers of not informing clients of the tests; of not explaining to clients the nature and inheritance of haemoglobin disorders; and of not testing those who wish not to be tested. It should enable a record of ethnicity to be made which is tailored to the specific health purpose for which the information is sought.

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.

Previous health services research has failed to account for the role played by clinical staff in the collection of data. In this paper we use the work of Roth on hired hand research to examine the politics of evidence production within health services research. Sociologies of work predict lack of engagement in the research tasks by subordinated groups of workers. We examine the role of midwives in researching ante-natal screening for sickle cell and thalassaemia in England, and construct three ideal types: repairers, refractors, and resisters to account for the variable engagement of health staff with research. We find some features of the hired hand phenomenon predicted by Roth to be in evidence, and suggest that the context of our project is similar to much health services research. We conclude that without concerted attempts (1) to change the social relations of research production; (2) to mitigate hired hand effects; (3) to assess the impact of the hired hand effect on the validity and reliability of findings, and (4) to report on these limitations, that health services research involving large teams of subordinated clinical staff as data collectors will be prone to produce evidence that is of limited trustworthiness.

Sociologists have long questioned the naturalness and stability of 'ethnic groups', suggesting that a concern with how they are socially constituted is more appropriate. However, the example of genetically based medical conditions appears to challenge this by suggesting that, in certain cases, ancestry, territorial affiliation and identity may be linked objectively by genetics. The article uses the example of sickle cell disease (SCD) to examine this claim. After reviewing the difficulties associated with notions of ethnicity, the article develops an account of how SCD came to be seen as an 'ethnic disease', and how it came to play a major role in the stabilization of particular forms of group identity. It concludes by emphasizing the need for a critical view of popular notions of territory and group identification.

Abstract: An unexplained death in custody represents an important focal point for public scrutiny of the criminal justice system, especially when excess deaths occur in those of minority ethnic descent. Sickle cell anaemia is a serious inherited blood disorder disproportionately affecting minority ethnic groups. Sickle cell trait is the genetic carrier state and not an illness. The evidence suggests that the treatment of sickle cell in the criminal justice system is twofold. Justice authorities have misused sickle cell trait to explain away ten sudden deaths, often associated with forced restraint, of African‐Caribbean people in custody. Meanwhile, seven deaths have been attributable to lack of provision of health care for those prisoners suffering from the illness sickle cell anaemia.

Studying kinship has involved doing family, displaying family and 'displaying family' as a sensitising concept to understand modalities troublesome to display. Fathers at antenatal screening clinics for sickle cell are faced with pressures to produce multiple displays – of family, illness knowledge, the good father and the model citizen – often in the face of racialised identities. Such fathers emphasise the importance of hypervisibility in gendered spaces and hypervigilence, lest pressures to adopt the 'right' disposition have adverse consequences for themselves, partners or their children. The displays of fathers, as well as displays they decline, are orientated to repair of social relationships. Where displays are provoked by social relations – resisting racist or gender stereotypes, navigating citizenship uncertainties, negotiating work and family lives – displays become problematic. Family display becomes troubled where the preferred social relationships fathers seek to constitute are ones that are not readily accommodated within extant social relations.