The most testing decision

Testing Women, Testing the Fetus

December 15, 2000

A recent edition of the magazine Prospect contained a round-table discussion about genetics that was notable for two things. First, a succession of male scientists argued that if abortion was accepted, there was no reason why pregnancies affected by genetic conditions should not be straightforwardly terminated. Second, the only woman in the group, philosopher Nancy Cartwright, was roundly rebuked by James Watson, co-discoverer of DNA, for refusing to predict the genetic future in the absence of empirical evidence about social impacts, a temptation he himself has been unable to resist.

Rayna Rapp's book should be required reading for Watson and his colleagues, and for everyone thinking or working in the area of prenatal diagnosis. It contributes important evidence and even more valuable wisdom. Her careful ethnographic research explores the views and experiences of seven groups of New Yorkers: genetic counsellors, geneticists, laboratory diagnosticians, pregnant women who accepted amniocentesis, those who refused it, women who terminated pregnancies found to be affected by prenatal conditions and families with children whose conditions could have been detected prenatally. Along the way, she takes into account the contribution of feminist, disability-rights, religious and scientific views. She also spends a fascinating chapter exploring the "laboratory life" of what she punningly calls "tissue culture", which "is at once a technique for growing cells, and an enrolment of biological material for making human meanings".

In these fascinating and moving accounts, Rapp explores the dilemmas and pains that accompany the new diagnostic possibilities of ultrasound and amniocentesis and genetic identification. Having herself experienced termination of pregnancy after diagnosis of foetal abnormality, she is sensitive to the complexity, confusion and stress faced by pregnant women and their partners. She refuses either to judge or to trivialise the decision-making processes individuals undergo. As an anthropologist, she constantly reminds us of the ethnic and class and other social differences that influence choice. As one genetic counsellor puts it: "How do we convey a chromosome risk when a low-income pregnant Afro-Puerto Rican woman experiences a 100 per cent chance of running out of food stamps this month, a 25 per cent risk of having one son or brother die in street violence and an 80 per cent chance of getting evicted by the end of the year? A one-in-180 chance of having a child with a chromosome abnormality at age 35 is probably the best odds she's facing." Throughout the text, the different languages of professionals and public, as well as of modern America, are engaged in "a tug-of-war of words pitting the formal vocabulary of biomedicine against the informal lexicon of most women's lives".

Many years of research are reported in this dense book. For example, women from lower income or minority ethnic groups were more likely to reject tests, while middle-class women were more dissatisfied with genetic counselling. Every counsellor Rapp spoke to remembered examples of couples who had aborted because the foetus was the unwanted sex. Discussion of sex-chromosome abnormalities raised the fear of homosexuality in some patients, who wanted to terminate pregnancies that might be lead to a gay child.

The long waiting period between test and results was a time of uncertainty and anxiety, but 95 per cent of respondents were glad that they had the test, however traumatic the outcome. Ninety per cent of women who received a positive diagnosis terminated their pregnancy. Male attitudes were deeply influential on women's decisions. There is a big psychological difference between an early termination of an unwanted pregnancy, and a later termination of a wanted pregnancy on the grounds of foetal impairment.

In prenatal screening and genetics, Rapp argues that a focus on technological capability and safety all but eclipses these sorts of psychological and social evaluation. Bioethics has emerged as a new domain for professional expertise, but she argues that the dominance of philosophy and law and the exclusion of social science data leave bioethics "self-confidently unaware of its own sociocultural context", and anything that might challenge its "presumptive universality". Rapp joins commentators who give credit to ordinary people negotiating irresolvable problems and finding practical solutions. She provides evidence for her judgement that "this technology turns every user into a moral philosopher, as she engages her fears and fantasies of the limits of mothering a foetus with a disability".

The book is not flawless. From an author as reflexive as this one, it is disappointing to read a value-laden phrase such as "the burdens of raising a child with Down's". With so much data and such a complex field, repeating the same quotation several times or reprising the same debate in different places is perhaps inevitable, but nevertheless some stricter planning and pruning may have been in order. And while the main applications of amniocentesis are in detecting neural tube defects as well as Down's syndrome, this book gives much more space to pregnancies and families affected by Down's syndrome than spina bifida.

There are differences between the British context and the one that Rapp describes. Here, the possibilities of non-directiveness and informed choice are slimmer. Many who support access to genetic testing and termination of pregnancy are very concerned at the ways that routinisation of antenatal care, inaccurate or inadequate information, and the implicit influence of obstetricians undermine choice and control by pregnant women and their partners. Rapp's research demonstrates both the complexity of prenatal screening decisions, and the emotional impact on women, whether or not they choose to continue with pregnancy. The genetics debate is often polarised between gung-ho scientists and their pro-life or disability-rights opponents. Both groups would learn much from this excellent book.

Tom Shakespeare is research development officer, Policy, Ethics and Life Sciences Research Institute, University of Newcastle.

Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America

Author - Rayna Rapp
ISBN - 0 415 91645 3
Publisher - Routledge
Price - £12.99
Pages - 361

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