Prenatal tests are an increasingly routine part of prenatal care, and with the recent announcement of a non-invasive smear test to collect foetal cells early in pregnancy, it is likely that prenatal testing will become a part of nearly every woman’s pregnancy. The social implications of developments such as this are profound. By allowing us to look earlier, to detect more, to intervene at more and different stages, gene and reproductive technologies are giving us the power to choose an increasing number of the characteristics with which our children are born.
For an introduction to some of the issues we face as we decide what to do with this power, the relationship between prenatal testing and disability is an enlightening one.
The primary function of prenatal testing is to detect foetal abnormalities, a fact that carries some clear signals about our values, our attitudes to ‘difference’ and our expectations of parenthood. As part of her doctoral research, Lisa Bridle interviewed the mothers of children with Down syndrome and their experiences with prenatal testing. She writes that:
testing is frequently presented as a compassionate enterprise, assisting families to avoid the birth of a child with disability … the language of ‘choice’, ‘reassurance’ and ‘family well-being’ obscures a reality that universal population screening is introduced because it is supported by cost-benefit analyses which assess the prevention of the birth of babies with disability as a core social benefit … it might be conceded that once a child is there you have no choice but to make the most of it, but it is an experience which it is sensible to avoid.
The primary abnormalities currently screened and tested for are those associated with neural tube defects (spina bifida) and Down syndrome. The New South Wales Mothers and Babies report for 2003 notes that ‘of the total 1646 terminations of pregnancy reported in 1997–2003, 1,160 (70.5 per cent) were associated with a chromosomal abnormality, the most common of which was Trisomy 21 (Down syndrome), and 233 (14.2 per cent) were associated with a neural tube defect’.
In response to statistics like these, the Down Syndrome Association of Queensland has developed a position statement on prenatal testing defending the rights of people with Down syndrome. It states, inter alia:
Down syndrome is not, in itself, a reason for termination. We recognise a valid role for prenatal genetic testing, but the primary goal of prenatal