Born and Made: An Ethnography of Preimplantation Genetic Diagnosis
Published by Princeton University Press
ISBN-10: 0691121931, ISBN-13: 978-0691121932
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This ethnography is the first full-length qualitative study of PGD (preimplantation genetic diagnosis), its history and application. Reviewing this academic book as an author and former patient, with a preference for accessible clear language, presented me with a challenge. I would not wish to undermine the usefulness to those professionals for whom it is a valuable resource, but if an aim of the study was also to inform and support end users of PGD, then it was largely inaccessible in the early chapters. The complex sentence structure, excessive use of parentheses and repetitive reference to comparative research made the preface, introduction and first two chapters an endurance test.
Chapter 3 has the appropriate title of Getting to PGD, and it was only at this point that I began to engage with the real-life stories so important to the debate surrounding this treatment. The author admits: 'It is, however, somewhat difficult to tell the 'story of PGD', both because it is complex and multi-faceted, and because there are many different versions'. The authors are most successful at conveying the history of the Human Fertilisation and Embryology Authority (HFEA) or outlining patient/clinician experience. A great deal of time is spent in defining terms, and saying what PGD is not, rather than concentrating on what it is. This approach is, at times, alienating, but the thorough examination and unpacking of definitions and cultural marketing techniques suffered by reproductive technologies over the years leaves no debating stone unturned.
Chapter 1 - What is PGD? - Examines the nature of 'desires and designs' and our abhorrence of creating 'designer babies' by asking (and answering) a crucial question: 'But why are these arguments so focussed on the idea of 'design' equated with genetic 'modification'? Technically, the only difference between PGD and IVF is that embryo selection is based on genetic information and morphology, instead of just morphology alone. And to be able to diagnose the presence or absence of a known, single, and specific mutation is not the same as modifying it'. A detailed examination is given of the first case where PGD was used as 'selection for a desired trait, not simply to exclude an unwanted one.
Testimonials are illuminating and balanced, giving insight not only into the patient perspective, but also the hopes and frustrations of practicing clinicians. These certainly resonated with my own experiences of speaking to those specialists faced with the question of how to know when the treatment is causing more harm than it is giving hope. Authors note that: 'Among the costs of PGD… are the possibility that its very existence acts as a pressure on couples to attempt it, and this returns to the problem of choice in the context of PGD. Does technology narrow choices by creating an imperative or a trajectory toward technological solutions? Or is it the case instead that prospective parents do not have enough choice in spite of the technology, especially because it so often fails?'
This book thoroughly debates and investigates the issue of PGD; its ethics and social impact, as well as presenting extensive and well-balanced, detailed and comprehensive scientific evidence. The appeal of this type of writing will remain lodged in the halls of academia, but if the research fuels a more accessible debate with patients and their families, then this can only be to the good.
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