Genetics, Society and Clinical Practice by P. Harper and A. Clarke, Bios
Scientific, 拢19.95, ISBN 1859962068
ANYONE who suspects that all human geneticists are closet eugenicists should
read this book. Its authors, Peter Harper and Angus Clarke, are practising
clinicians at the cutting edge of medical genetics. And both men are keenly
aware of the pitfalls lying in wait for society as it rushes to gather the
fruits of the human genome project.
Harper and Clarke seek to explore the practical consequences of clinical
genetics for individual clients, their families and society at large. Unlike
many in their profession, they stress their limitations, not their expert
knowledge. After all, argues Clarke, clinical genetics typically offers
information, explanation and options, rather than therapy. 鈥淲e dispense words,
not tablets.鈥�
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With sensitivity and insight, Genetics, Society and Clinical
Practice tackles controversial issues ranging from the genetic testing of
children to the search for genes for IQ. Many of the chapters are based on
papers previously published in medical journals, brought bang up to date.
The generous tone of the book is set early on, in brief but revealing
autobiographies. 鈥淪ince this book has been so largely shaped by our own personal
views鈥攕ome would say prejudices鈥攚e feel we owe it to readers to say
a little more about ourselves than is customary.鈥� The authors are colleagues at
the Institute of Medical Genetics at Cardiff, and both grew up in strongly
medical families. They are determined defenders of Britain鈥檚 National Health
Service, and regard themselves as 鈥渇irmly on the `left鈥� politically鈥�.
The book concentrates on 鈥渢he practical issues that affect individuals in
real life鈥�. Harper and Clarke want to stimulate a wide debate about what
constitutes 鈥済ood practice鈥� in human genetics, having 鈥渟een at first hand the
problems that can arise for families with genetic disorders if clinicians and
others involved are unaware of them or handle them insensitively鈥�.
In one chapter, for instance, Clarke highlights the 鈥渉idden casualties鈥� of
prenatal genetic screening. He warns against the rise of a 鈥済enetic cleansing鈥�
ideology that seeks the most cost-effective manner to prevent the birth of
affected children. In another, Clarke makes the case for a style of genetic
counselling that puts a premium on 鈥渢he human meaning of the client鈥檚
experience鈥�, as opposed to one that covertly prejudges the value and
significance of the numerical risks proffered.
Harper, professor and consultant at Cardiff, has pioneered genetic testing
for Huntington鈥檚 disease. This inherited neurological disorder presents special
dilemmas for families because symptoms develop only in middle age, and by that
time affected individuals may have passed the gene to their children.
In Harper鈥檚 clinic, anyone who is considering having a test to see whether
they have inherited the Huntington鈥檚 gene gets two lengthy consultations and
plenty of time in between to change their mind before any testing goes ahead.
After the results have been given, four follow-up home visits are arranged,
stretching over a year. Harper acknowledges that it may seem 鈥渜uite impractical鈥�
to give this amount of time to the testing, but he says he has seen lasting harm
done to clients through 鈥渢ime not being given to careful explanation and
answering of questions鈥�.
Harper and Clarke also dare to question the wisdom of the Medical Research
Council鈥檚 funding of research that has the potential to discover genes that
contribute to intelligence, or the lack of it. Harper fears that such research
could lead to gene tests on schoolchildren and fetuses, and perhaps fuel a
public backlash against all research into human genetics. The only safeguard, he
says, is for such research 鈥渢o be fully in the public domain from the
辞耻迟蝉别迟鈥�.
As for growing fears of a resurgence in eugenic thinking, Harper recommends
Benno Muller-Hill鈥檚 Murderous Science, an account of the active role
played by doctors and scientists in the atrocities of Nazi Germany. 鈥淭his book
should be compulsory reading, and deeply disturbing reading it is, for all
clinicians and scientists working or training in human genetics.鈥�