Prenatal Testing and Disability Rights

Edited by Erik Parens and Adrienne Asch.

Georgetown University Press

£17.25

ISBN 0 87840 804 5

It is profoundly ironic that, just as we have finally got a
Disability Rights Commission and Disability Discrimination Act 1995
we are also witnessing a massive proliferation of prenatal tests –
and abortion of foetuses with any detected impairment.

To many of the contributors to this book the messages conveyed
by this increased use of prenatal diagnosis and termination of
pregnancy in our society is clear. The lives of disabled people are
not regarded as of equal value to the lives of those who are not
(currently) disabled.

These are troublesome issues with which to engage, particularly
for those of us who also believe strongly in women’s right to make
choices about when and whether to give birth, and who know of the
impact of a disabled child on families living in a society where
insufficient support is available, opportunities are denied and
discrimination is widespread.

Until now, there have been few resources available to the lay
reader to help them through this minefield. The advent of prenatal
testing and disability rights changes that. Here are 18 chapters,
drawing on the experiences of a two-year project at the Hastings
Center, in New York, which brought together disabled people,
parents with disabled children and experts in disability studies,
medical genetics, genetic counselling, medicine, law, and social
sciences.

The contributors offer an overview of the project and its
context, parenthood, disability and pre-natal testing, and the
messages and meanings of prenatal genetic testing.

The comprehensive coverage of the multiple issues and
perspectives involved in this complex area is impressive. While
some contributors are uneasy at the assumption that even a
relatively minor impairment should lead to termination of a
pregnancy, there is an understanding of why parents make the
choices they do. The contributors make clear that “it is not so
much the parental choices that we challenge, as the assumptions and
context within which health professionals inevitably frame those
choices”.

The book offers no easy answers to difficult dilemmas – indeed
the group itself was unable to reach consensus on a number of
issues. What it does do is raise many of the hidden assumptions
implicit in attitudes to, and provision of, prenatal testing and
abortion. It prompts us to ask how easily do the messages conveyed
by our policies and practices in this area sit alongside society’s
avowed commitment to promoting equal rights for disabled
people.

Linda Ward is director, Norah Fry Research Centre,
University of Bristol, and editor of Considered Choices? The
New Genetics, (2001).