Ethical Problems and Genetics Practice
Published by Cambridge University Press
ISBN-10: 1107020808, ISBN-13: 978-1107020801
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One of the difficulties in teaching medical students about the ethics of clinical genetics is that it's often hard to get them to appreciate the multitude of problems raised in everyday practice.
For that reason I'd been looking forward to reading Michael Parker's book, based on complex real-life cases, ever since I heard about it through the Genethics Club — a national forum of around around 20 to 30 genetics professionals that meets several times a year. Its overall aim is to explore the ethical difficulties genetics professionals face and develop shared models of good practice.
But what does 'Ethical Problems and Genetics Practice' seek to do? Using the cases and discussions raised in the Genethics Club it 'aims to provide an account of the moral world of the genetics professional through an exploration of how the moral commitments underpinning ideas of 'good practice' in contemporary clinical genetics are transformed into ethical problems'. In so doing, it provides a rich resource for those involved in genetics practice and also those with research and teaching interests in medical ethics.
Not only does it provide a useful resource, it also raises new questions. Take one section in the second chapter, which gives an overview of what's involved in a clinical session, while looking at the balance of knowledge and obligations to the patient and family. Parker makes the interesting point that 'genetic professionals see themselves as family practitioners treating and supporting families rather than individuals', and it's one I hadn't fully considered before.
The importance and implications of the family to the practice of genetics is explored in more detail in the following chapter, where Parker teases apart what 'family' means in both biological and cultural/social contexts. He explains the ways in which both of these aspects of family affect the way that genetics knowledge is understood, managed and shared. One of the case studies illustrates this perfectly:
'A four-year-old boy living with adoptive parents has a life-limiting X-linked condition. It is very rare and not much is known about it. He is very sick and often in hospital. The only chance for his survival is a bone marrow transplant. The father is not around anymore and the mother is not compatible. The boy however does have two siblings who are also in care (aged five and six). The boy's social workers want to locate and test the boy's siblings to see whether they could be donors for the first child. There is also the question of whether they are at risk themselves. What should we do? Who should decide?'
Next, Parker moves on to look at the relationship between patient and genetics professional, and the importance of patient-centredness, valid consent and non-directiveness. Ethical problems raised here include how to advise patients who want to make what appear to the counsellor to be inappropriate decisions (decisions that are 'mistaken, misguided or immoral').
'Different genetics professionals will often have different views about what constitutes best practice in particular cases', Parker writes regarding multi-professional practises. In particular he highlights situations where there are disagreements between individual genetics professionals; between professional groups involved in the care of the patient; and the tension that exists when the clinician is both a researcher and a practitioner.
Finally, there are two chapters examining the role of the Genethics Club, and the practice of the professionals who attend. He concludes that these professionals display a commitment to developing moral craftsmanship - they don't simply coming along to the meetings to find solutions to a particular situation, but also 'working to maintain a sustainable living morality'. The concluding chapter also contains reflections on methodological approaches to the study of bioethics.
This book is an extremely valuable addition to the ever-expanding library of contemporary bioethics texts. For me its real strength lies in the fact that it is very much grounded in real issues - using everyday practice and cases from clinical genetics settings - not simply theoretical 'what if' situations.
I would recommend it to all clinical genetics and medical ethics professionals, as well as to medical students. It's highly readable, informative and thought-provoking.
As our knowledge and practice of medical genetics continues to expand, there's no doubt that new complex ethical situations will emerge. This book will be invaluable in aiding the moral craftsmanship required to reflect, examine and act appropriately in all these situations.
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