By Joëlle Vailly
Checking out for genetic ailments or qualities is a speedily constructing perform, the main known kind of checking out presently in use being child screening. in response to a five-year learn venture and winner of the Prix 'Le Monde' for tutorial learn in France, The beginning of a Genetics coverage analyses the 3 dimensions - medical, political and ethical - of the social concerns raised by way of a coverage of screening for the genetic illness of cystic fibrosis among infants. Drawing on vast interview fabric and observational study, it explores the stipulations below which a screening coverage is set upon and applied, the kinds of political common sense underlying it, and the results it has on norms and values. Revealing the binds that exist among types of biomedical wisdom and political ideas, while displaying how the idea of biomedical abnormality is being prolonged, this e-book sheds gentle on decisions surrounding the assumption of the 'quality (of) life'. A rigorous exam of the discourses and practices of scientific genetics within the early twenty-first century, The start of a Genetics coverage will entice sociologists and anthropologists with pursuits in drugs and the physique, evidence-based care and questions of biopolitics and governmentality.
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Extra info for The Birth of a Genetics Policy: Social Issues of Newborn Screening
Sample text
26 The Birth of a Genetics Policy of the first genes to be isolated for a genetic disease – and not just any disease, as outlined in the introduction. In theory, this was therefore likely to pave the way for other genetic approaches as the discipline reached its peak. Above all, these discoveries gave rise to a wave of hope among patients and their families who, encouraged by researchers, thought that a treatment would be available on the horizon by the year 2000. While this hope was dashed, research nonetheless had practical effects and it is no coincidence that the idea of launching NSCF formed in 1985, the very year that the gene was located.
In Chapter 2, I consider the scientific side to the policy programme by looking at the evidence it provides about its benefits and the process through which what is considered to be ‘true’ in biomedicine today is constituted. The focus here is not only on the epistemic frameworks of actors implementing a public policy but also on the way these frameworks are made and come apart – in short, the dynamics of evidence. This allows for analyzing production and dissemination of evidence as well as for grasping the relative place of ‘evidencebased medicine’ in a process where knowledge, rumour, and emotion all operate together.
I show the subtle power relations operating between professionals and patient organization members, and the way screening was partially designed as a political technique for orienting patients in time and space. Lastly, the policy is analyzed at the capillary level, far from the centres of power and decision-making; that is, among mothers in maternity hospitals. Using the example of this policy, I attempt to show in Chapter 4 how biomedicine’s approach to abnormality and the norm has evolved. I show the technical limitations of screening, which has the effect of extending the application of the notion of biological abnormality, and the professional approaches and practices involved in paediatric follow-up care of patients, which have extended clinical abnormality.