The thesis that genetics brings with it new medicalisation possibilities, which will strip of us of our ability to recognise ourselves and others without reference to the codes imprinted in our DNA remains a popular theme in medical sociology. The advent of next generation sequencing (NGS) (the promise of cost efficient molecular analyses of all the components of an individual's genome) is giving new stimulus to debates about a post-human future where social position, identity and inequalities derive primarily from what such analyses disclose about our make up. In this context, Latimer's book is a very timely and important contribution to such debates, proposing we should take greater care in understanding how the new genetics is changing the relationship between medicine and science, between medicine, science and society and between medicine, science, society and the individual. Some may argue that because the book's research predates the emergence of NGS that it cannot speak to what futures may emerge in light of its move from science fiction into healthcare practice, but as important to the validity and long term contribution of the book is its approach to conceptualising how the new genetics comes to be a part of medicine and social life. The book draws from long term ethnographic research Latimer has undertaken in the laboratories, clinics and academic worlds of genetics. Her particular focus here (in this book at least, other research has looked at other arenas where science, medicine and human life co-exist) is on the work of paediatric genetics, where problems in child development trigger genetic investigations through both molecular analyses of blood and also close examination of the child's body – known as dysmorphology. Latimer's approach is situated within science and technology studies, in particular actor network theory, drawing from observations of clinic life and interviews with key actors (primarily medical) to explore the practices, fields, assemblages and circuits that constitute genetics. Her key argument is that science does not win out over medicine as the authority in diagnosis, instead they work together to explore the puzzles in front of them. A core agenda Latimer has is to give the clinic – and the actors present within it – credit for its role in shaping the influence of genetics. She rightly argues that the boundaries between the fields of the research laboratory and the medical clinic are far more defuse than often recognised. Not least because they are co-located in terms of funding, physical location and the actors within them (emphasised once more by the new NHS funded 11 Genomics Medicine Centres in the UK). Several key benefits in understanding emerge from Latimer's way of analysing the worlds of contemporary genetics. First, it acknowledges the many uncertainties of genetics. Much of what emerges from the combination of molecular analyses and dysmorphology are correlations/associations between phenotype and genotype. Following the analyses of the lab into the clinic and the consultation between geneticist, patient and family draws out the uncertainties embedded in diagnostic practice. There is little reason to suggest that such uncertainties will diminish with NGS, instead there is every reason to suggest they will increase. Second, it stresses the importance of materiality, in particular the fleshiness of actual bodies, as well as virtual displays of them. Several writers have zoomed in on the importance of the display of genetic variation made possible by NGS and its predecessors, to argue that the medical gaze is becoming virtual. Such arguments lose their significance when the virtual display moves into the material worlds of the clinic and the patient's broader intimate and family life. Finally, drawing the lab and clinic into the analyses through ethnographic research also brings in a crucial set actors often marginalised in abstract discussions of genetics and medicalisation: the patient and those around them. In Latimer's analyses this is primarily the family, who's personal and social history become part of the diagnostic process. As this occurs the family become participants in shaping the meaning genetics will have for them and their child. As NGS moves into clinical practice, it will remain crucial to retain considerations of what patients and those around them bring to the diagnostic process and then how genetics comes to have a role in their life. As Latimer and others carry on their investigations of the interface between the lab and the clinic in the future, what would be great to see is more focus on bringing family life (including children's perspectives as either patients or significant others) into that interface by travelling further into the everyday material worlds where people will continue to make sense of and live with the codes and information of their DNA.
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Nov 1, 2016
Sheila W Mcdonald + 2
Open Access
