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Book Review: The Sorting Society - The Ethics of Genetic Screening and Therapy

7 September 2009
By Caroline Gallup
Author:  Making Babies the Hard Way - living with infertility and treatment
Appeared in BioNews 524

The Sorting Society: The Ethics of Genetic Screening and Therapy

Edited by Professor Loane Skene and Dr Janna Thompson

Published by Cambridge University Press

ISBN-10: 0521689848, ISBN-13: 978-0521689847

Buy this book from Amazon UK

'The Sorting Society: The Ethics of Genetic Screening and Therapy' edited by Professor Loane Skene and Dr Janna Thompson

The Sorting Society: The Ethics of Genetic Screening and Therapy

Edited by Loane Skene and Janna Thompson

Cambridge University Press (2008) ISBN 978-0-521-68984-7

I recently attended a consultation meeting hosted by the UK's Human Fertilisation and Embryology Authority (HFEA). A representative from the deaf community put an open question to the assembled group of clinicians, research scientists, counsellors and ART (assisted reproductive technology) recipients: she wanted to know if anyone would terminate a pregnancy if it was discovered that the developing fetus was likely to be born deaf? Had we read this book, we may have been better placed to respond to her question.

The preface and first chapter describe the contributors' belief that: 'a society must put some limitation on the use of genetic technology.' The content covers 'liberal eugenics', morality, human independence and interdependence (felt mostly via the experiences of infancy, sickness and old age) and even cloning. Whilst the arguments are relatively balanced within each essay, there is only one person disagreeing with genetic intervention overall. Co-editor and philosopher Janna Thompson cautions that: 'The issues raised... are of the most fundamental and challenging kind when we are deciding the kind of society in which we want to live.' Contributors range from philosophers and lawyers, through to experts on bioethics and obstetricians. It is intended to inform readers with no prior knowledge of genetic testing and it uses 'as well as philosophers, political commentators, scientists, lawyers, people with genetic conditions and their families...'.

When asked to review this edition, I had been anticipating a pretty 'dry' read, but was pleased to find the content both interesting and thought provoking. As a patient 'expert', but also a layperson, the unfamiliar concepts and academic language required perseverance at times, but the experience was rewarding throughout.

Chapter 2, written by geneticists Agnes Baker and David Cram, lists types of available testing; applications, differences and benefits. The definitions and reasons for using a certain type of test are clearly and concisely described having no need to 'dumb down' the science. Baker and Cram deal adroitly with the notion of being able to select specific physical characteristics in a fertility clinic, and the theoretical use of this misinformation as an argument to outlaw any type of genetic screening: 'The determinants of characteristics such as height and intelligence are complex, determined by the combination of many genes as well as environmental factors. Whilst there are concerns that PGD could be used to produce 'designer babies', in reality the complexity of the determinants... in the setting of assisted reproduction severely limits the potential of such options.'

Edgar Dahl, who is listed as Senior Research Fellow, Centre for Obstetrics and Gynaecology, University of Giessen, Germany, talks about the merits and demerits of a 'sorting society', explaining some of the culturally diverse reasons for sex selection. He outlines research carried out in the UK, US and Germany around the question of gender preference, also explaining other factors behind a desire for such 'sorting' based in religion or economics.

The mid-section deals with philosophical arguments for cloning; the concept of 'procreative beneficence' (first expounded by Julian Savulescu - also a contributor); societal equity and value morality. In general, the essays succeed in engaging and educating. Interested in the question raised by the deaf woman at my HFEA meeting, I was drawn to the wider arguments surrounding debate into definition and interpretation of 'disability' discussed by Savulescu. In the following chapter, Lynn Gillam, an ethics professor and expert on cloning to avoid genetic disease, and Leslie Cannold who is Honorary Senior Lecturer at the Centre for Gender and Medicine in Victoria, Australia, write about 'balancing parental procreative autonomy and social equity and justice', Cannold says that: 'The challenge is to design a regulatory scheme that places the least possible limits on parental procreative freedom consistent with meaningfully reducing the harms that seem likely to result from unfettered parental choice.'

Inevitably, some authors have a more accessible style than others. The mid-section of this eleven-chapter book is academic and esoteric - presenting papers for consideration, rather than information with an everyday use for the patient or partner. Nonetheless, this collection makes fascinating reading. It provides a comprehensive introduction to some of the background arguments influencing the fertility legislation and regulation that directly affects us, and which may otherwise seem prescriptive and frustrating.

Buy The Sorting Society: The Ethics of Genetic Screening and Therapy from Amazon UK.

Caroline Gallup is author of Making Babies the Hard Way: Living with Infertility and Treatment (buy this book from Amazon UK).

11 July 2011 - by Nishat Hyder 
The German parliament has passed a new law allowing PGD in limited circumstances. Under the new law, couples undergoing IVF can use PGD to screen embryos only if the parents have a predisposition to a serious genetic illness...
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