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Edited by E Parens, A Asch. Georgetown University Press, 2000, £46.75 (hb), £17.25 (sb), pp 371. ISBN 0-87840-804-5
Here is a book that should be read by all those involved in the fields of prenatal diagnosis and genetic counselling. It is based on a two year project set up in the late 1990s by the Hastings Center in New York, in which prenatal testing and its likely future advances were discussed, from their contrasting viewpoints, by professionals providing such services and those committed to promoting disability rights. Exchanges between a group who see any form of prenatal testing for malformation as an unacceptable affront to those with disability and those who offer such testing in their daily routine will inevitably be difficult. And, reading between the lines it seems likely that the project nearly foundered. One original intention was to develop guidelines concerning which anomalies might warrant prenatal diagnosis and abortion, and which were too mild for such action. The disability rights members could not agree to any such distinctions so this objective was abandoned. There was, however, firm agreement on other questions. In particular, there was agreement on the need for broader exposure to disability during training of medical students and genetic counsellors; on the need to demedicalise disability and focus less on the impairment, and more on the need for society to accept and accommodate those affected so that their disability was minimised.
The opening chapter is a useful overview of the disability rights critique of prenatal testing and the next two sections fill out the detail. Those with experience of disability set out their views and those who see prenatal testing as by no means undermining the value of the disabled state theirs. The contributors write well and put their case with logic as well as vehemence and each chapter is well referenced. There is considerable discussion of “expressivity”, which in this context refers to the message that the offering of a prenatal test with the implied possibility of selective abortion, sends to society. Some argue that this is one that devalues the disabled community. The participants accepted a woman's right to abortion. It is not this issue but the request for abortion of a particular fetus on grounds of one characteristic (for example trisomy), that the disabled contributors found unacceptable.
The final section of the book deals with practical matters. A lawyer voices concern that as more tests become available defensive medical practice will mean that more are offered until the medicolegal norm includes investigations that common sense would condemn. Drawing on her extensive research experience Dorothy Wertz suggests criteria on the basis of which decisions could be made for offering or not offering a test. She argues that it is important that any such criteria are not based on the seriousness of the disorder as this can be highly subjective and dependent on individual experience.
The concluding chapters come from a fetal medicine obstetrician and a genetic counselling educator and her student, who describe the impact the discussions have had on them both personally and professionally.
There is agreement that pretest counselling, particularly for serum screening for neural tube defect or Down's syndrome, is woefully inadequate, and that when an abnormal result is obtained there should be more opportunity provided for the potential parents to obtain first hand information on both the joys and the sorrows of parenting such a child. With decisions having to be made rapidly and while parents are in the midst of coming to terms with their fetus being “different” this is hard to put into practice. Much will depend on the personal beliefs and attitudes of those who counsel them.
The book spells out clearly the tension between offering parents the opportunity to avoid the birth of a child with disability and maintaining a positive attitude to those who have these disabilities. This message and the need to work towards a society where the disabled are welcomed as equals should be an ethos imparted at the training stage. The book provides an admirable resource for students, their teachers, and practitioners.
The book's chief disadvantage is that it is based on American practice where money will buy investigations more readily than in the UK, but the ideas put forward can be applied to any local situation. The book also seems to indicate the existence of a serious hiatus in some US states between the funding of a prenatal test and of an abortion arising from its result, a pitfall to guard against.