Ethnicity and the politics of the new genetics: Principles and engagement

Identifying the genetic basis of disease is not a straightforward medical procedure but implicates the broader social, cultural and political context. Ethnicity represents an important part of this context, particularly given the confused and poorly informed debate about genetic differences among supposedly different 'racial' populations. Debates about the 'new genetics', however, have not engaged fully with the issue of ethnicity and racism. This paper, by reviewing a mix of empirical and theoretical debates, explores the discursive practices that inform cut-rent thinking on genetics, ethnicity and race. The account begins by exploring some of the philosophical tensions inherent in providing genetic testing. In doing so, the paper argues that current debates about genetics are not neutral but evoke a specific set of received ideas and codes of intervention, embodying social and power relationships. The paper then broadens the discussion by exploring the general meaning of screening and counselling for the 'lay' population, before focusing on the process of providing information and identifying people as carriers. The paper concludes by suggesting that the social space in which the 'new genetics' is enacted, understood and given meaning raises generic concerns, irrespective of ethnicity. These include the potential tension between prevention and informed decision making, whereby ideas about empowering individuals to exercise choice exist alongside a more general societal concern with minimising impairment and illness. In more practical terms, individual choice is compromised by poor-quality care, inadequate information, insensitivity to an individual's worries and concerns and a more general failure to meet his or her needs. At the same time, however, the often racialised perspectives articulated through the activities of service professionals can further complicate the choices and decisions available to minority ethnic populations. The failure to recognise and respond to diversity; blaming minority ethnic populations for their health problems; and the pervasiveness of racist myths and stereotypes in service provision, serve to disadvantage minority ethnic populations. This explains why themes such as equity and access, political engagement as well as more general notions of deservingness based on the construction of citizenship and identity emerge as fundamental in making sense of the relationship between ethnicity and the politics of the 'new genetics'.