Before birth: a brave new world

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 testing should not be to reduce the birth prevalence of Down syndrome.

Even more thought-provoking are the words of women with disabilities. In a submission to the 2004 Queensland review of maternity services, Women With Disabilities Australia (WWDA) writes:

Many disabled feminists support a woman’s right to abortion. However, when abortion is chosen as a result of prenatal screening which had detected foetal ‘abnormality’, many disabled feminists express concerns that social prejudices and negative stereotypes about disabled people lead to automatic assumptions that women with disabilities should not bear children, and babies who may be disabled should not be permitted to be born.

Speaking at the Australian Women’s Health Conference in 2001, Helen Meekosha said in her keynote address: ‘The issue of prenatal testing and selective abortion is of great concern to disabled women … disability is seen as incompatible with a life satisfaction. In the disabled women’s movement, we argue that it is simply not the case. To have a disability does not mean that you are continually unhappy, that your parents or partners are unhappy or your siblings are unhappy.’

She shifts the debate and says, ‘There is no prenatal testing, as yet, for genes associated with musical genius or Olympic athletes. However, parents with athletic or musical children may have an unexpected expense, family disruption, sibling rivalry and so on. The costs of having such children may well be high, but nobody would suggest they are too expensive for society.’

While we can’t yet test for ‘genius’ genes, the time when we are technically able to test and select for physical or mental characteristics and features is probably approaching. Preimplantation genetic diagnosis—which potentially facilitates extensive genetic testing of an embryo before it is implanted in the uterus—is already available to some people using in-vitro fertilisation. On one of its fact sheets, the Centre for Genetics Education at the Royal North Shore Hospital, Sydney, says that ‘for couples with a moral or religious objection to pregnancy termination, and who also have a risk of having a child with a genetic condition, this technique may provide the opportunity to have an unaffected child’.

However, helping us to navigate one ethical issue (if indeed it does) does not help us to eliminate them all. It may just open up more. If we decide that our morals or religion do not allow us to abort an ‘affected’ child, but do allow us to screen an embryo before it is implanted, do we make preimplantation genetic diagnosis available to all couples? To all women over the age of 35? Which genetic conditions are eligible and which are not? Is gender a genetic condition? And what of the people who have no idea what their genes will do? Does society somehow compensate them for the unaffected child it did not provide?

And what does all this say about our expectations? As the WWDA submission reminds us, ‘The culture of perfection pervades our society … we are criticised as being too fat, too tall, too short, too old, etc. Prenatal testing now offers up the potential to have only a “perfect child” and to reject children perceived as imperfect.’

The advance of genetic and reproductive technologies is inevitable, and there are few people who would call for a blanket ban on these developments. Not only is that impractical, the technologies have many positive outcomes. They give us information, flexibility and choice. They bring opportunities we might never have had. They save lives, enrich others. Furthermore, they add to a whole range of other things we do to prevent disability and to avoid illness—we immunise ourselves and our children, we take folic acid before and during pregnancy, we avoid particular drugs and medicines.

These are, however, scientific outcomes with enormous social, cultural and political implications and we must develop the resources to hold sustained, informed debates about the direction we want to take. This is difficult in a debate with no absolutes and with boundaries that constantly expand, but research has demonstrated that the quality and the nature of the information we are given has a real impact on the decisions we make.

A content analysis of information about Down syndrome presented to parents in the United Kingdom, for example, showed that there was a ‘bias towards medico-clinical information’. A study from the United States says that in one medical centre where ‘every attempt is made to introduce that pregnant woman and her partner to families raising infants, children and/or young adults with Down syndrome … only 62 per cent of women who discover they are carrying a foetus with Down syndrome decide to have abortions—a rate of abortion after a positive diagnosis believed to be relatively low’.

High-level documents recognise the need for information beyond the medical. The joint HGSA/RANZCOG* prenatal diagnosis policy, for example, recommends that each state or territory should have at least one specialised prenatal diagnostic service, and that prenatal diagnosis be undertaken by specialised teams which ‘would comprise a clinical geneticist, genetic counsellor, midwife and/or nurse specialising in prenatal diagnosis, medical specialist in obstetric ultrasound, obstetrician specialising in prenatal diagnosis and management of foetal abnormality, paediatrician, social worker, a clinic co-ordinator, laboratory staff, and secretarial assistance’.

My recent experiences with prenatal testing suggest, however, that the emphasis is still on medical aspects and that beyond our individual experiences of prenatal testing, we need broader community discussions. We need to create safe places for safe debates where we acknowledge that these are individual and collective decisions that have both individual and collective implications. We need the freedom to make decisions based on our own random collection of experiences, and the tools to see beyond the isolation of our own knowledge.
 
There is no one-size-fits-all solution to any of the questions we will ask. The answers for one person will not always be the answers for another, and the answers that work at one point in time will not work at another. Some women, for example, will never terminate a pregnancy, some will under certain conditions and not others, some will at one time but not at another. So we need policies which allow for a diversity of experiences, a diversity of women, a diversity of pregnancies, a diversity of outcomes.

We need to ask ourselves what we want to do with the power that science gives us. And as we ask ourselves these questions, we should remember that life throws unexpected, uncontrollable, life-changing events our way. We can’t stop that.       

*The Human Genetics Society of Australasia and the Royal Australian and New Zealand College of Obstetricians and Gynaecologists.

Tracy Crisp is an Adelaide writer.

 

 

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