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Shakespeare, Tom --- "Prenatal Diagnosis, Disability Equality and Freedom of Choice" [2001] ALRCRefJl 20; (2001) 79 Australian Law Reform Commission Reform Journal 19


Reform Issue 79 Spring 2001

This article appeared on pages 19 – 21 & 71 of the original journal.

Parental diagnosis, disability equality, & freedom of choice

By Dr Tom Shakespeare*

The potential of new screening techniques and new genetic knowledge to provide access to more and more powerful prenatal diagnosis for more and more women raises a range of issues for ethicists and law makers.

The possibility of selective termination gives every pregnant woman an impossible dilemma, and raises alarming prospects for disabled people and their families. I cannot bring any expert legal insights to these issues: my discussion reflects my experiences as a disabled person, as a parent, and as a professional social researcher and amateur bioethicist. But it seems clear to me that these dilemmas raise a range of ethical and legal questions: the right to know and the right to remain ignorant; issues of information and privacy; questions of responsibility; issues of choice and the limitations to be placed on choice; and problems of discrimination against disabled people and against families with disabled children.

Many people with disabilities have reacted in alarm at developments in genetics and screening technology.1 While anti-discrimination legislation and slowly improving access and welfare services have improved the quality of life of many people with disabilities, at the same time these new genetic developments promise the elimination of the problem of disability. Scientists and doctors raise hopes that the ‘medical tragedy’ of disability may be a thing of the past. People with disabilities reject this negative view of their lives, and point to the many achievements and successes of people with genetic conditions. They also highlight the fact that much impairment is not genetic in origin: while approximately one per cent of births are affected by congenital abnormality, more than one in eight of the population have disabilities. Of course, much impairment is caused by accident, disease or the effects of ageing, and genetics will impact little on these issues. Moreover, screening is never infallible: despite the new technologies, many impairments will not be detected, and many babies will develop disease. It is important not to raise the expectations of parents and other patients that genetics is a quick fix, and it is vital that we do not see disability as a problem which can and should be prevented.

I differ from some people with disabilities because I believe that people have the right to access genetic services and to choose selective termination. However, I believe that they must be provided with full information about genetic conditions, and be given support to continue pregnancies or to terminate them. Doctors and nurses must be non-directive, and time must be provided to enable people to make these difficult decisions and do what is best for them and their families.2 Unfortunately, many screening programs throughout the world are designed with the aim of eliminating disability, and people are not given a proper choice. Such programs could justly be called eugenic.3

Parameters for termination

The role of law is to set parameters for what genetic information parents can expect to be offered, and to set parameters for legal termination of pregnancy. While I support the principle of choice, I do not think that prospective parents should have complete autonomy: that is, I believe that after the age of viability (currently approximately 24 weeks into pregnancy), it should not be legal to terminate pregnancy or practice foeticide, except perhaps in cases where the life of the mother is in danger, or where the foetus is so profoundly impaired that it has no chance of surviving the pregnancy or birth. The decision to terminate pregnancy becomes more morally problematic as pregnancy advances and the foetus develops. While in the first trimester it may be acceptable to have a termination on social grounds, as the pregnancy continues, the grounds for termination need to be serious medical abnormalities.

A dilemma is posed for ethicists and lawyers when women or couples request termination on what appear to be trivial or minor grounds. For example, most developed countries prohibit termination on the basis of sex. Barbara Katz Rothman writes of the increasing tendencies towards ‘tentative pregnancy’, where women do not accept their baby or bond with it until it has emerged from a battery of tests with no evidence of blemish or abnormality.4 In this way our tolerance for difference diminishes. I feel uncomfortable when termination is offered later in pregnancy on the basis of impairments such as achondroplasia (short stature), which is not a major medical problem and need be no obstacle to good quality of life. When termination is offered for correctable abnormalities such as cleft lip, club foot or other minor problems, then I think quality control in reproduction has gone too far. But I am unsure whether my ethical objections to individual behaviour provide a sufficient basis for legal restrictions on patient autonomy.

Prenatal diagnosis

There is increasing demand for prenatal diagnosis, and it is difficult for doctors and nurses to deny information, or to restrict autonomy. Often, if a couple is not offered diagnosis, or if they are given an incorrect ‘all clear’, they may sue the healthcare provider subsequently for wrongful birth. This may mean that, as in the United States, doctors insist on women undergoing all the relevant tests to protect themselves against malpractice suits. Alternatively, insurance companies may insist on tests, and refuse to meet healthcare costs of babies with disabilities ‘who could have been prevented’. In wider society, there is increasing evidence of blame for women who choose not to use prenatal diagnosis or selective termination. When families have babies affected by Down’s Syndrome, it used to be considered as ‘bad luck’, whereas now it is increasingly considered ‘bad judgment’, and parents may be blamed for not avoiding the birth of a child with disabilities.5 These broader social contexts and pressures undermine the choices of couples, and mean that it is harder to continue with affected pregnancies. Because abortion is a profound and personal moral choice, I believe the law should ensure autonomy within ethical parameters and enable prospective parents to decline testing or termination if that is their wish.

These situations have to be put within a broader social and cultural context. Society is not welcoming of children with disabilities, and services are often inadequate. The very real costs of bringing up a child with a serious impairment are often the reason that parents may sue for wrongful birth. Yet society must find better ways of meeting the medical and social support needs of children with disabilities than tort law. It would be humane to remove the blame, and ensure that children and adults receive what they require and deserve as citizens. Moreover, it is the inadequacy of services and benefits which leads many parents reluctantly to decide to terminate a wanted pregnancy: they may feel that they will not be able to cope unsupported with the stress of having a disabled family member. If these economic and social barriers were removed, parents could make a decision about their pregnancy based on their feelings about the impairment, not their fears about the world into which their child with disabilities would be born.

The fact that many minor impairments can be detected prenatally via ultrasound scans or serum screening or other techniques raises disclosure dilemmas, as I argued above. Parents may not anticipate what tests may tell them: clinicians may be looking for one thing, and find out something else. Have the parents got a right to know? In many cases, the results of tests are not conclusive: they show a raised risk, not a definite certainty. It is very difficult for parents to know what to do in these circumstances, and different professionals may take different views. It may also be difficult to predict how serious a condition might be: Down’s Syndrome, for example, has varying effects. Deciding which clues to disclose, and helping parents interpret ‘soft signs’ or raised risks is a very difficult process.

Privacy and disclosure

As with other areas of genetic diagnosis, prenatal testing also raises issues about the privacy of information: do other family members have a right to be informed of genetic risks which they may also share? If clinicians have information about one patient, do they have an obligation to warn related patients, or a prior obligation to protect patient confidentiality? It may be very important to ensure that information remains private, and does not reach third parties, in order to avoid either stigmatisation of the resulting child, or discrimination against them. Finally, if parents find out something about their children before they are born, should they disclose this to them? There is a consensus in clinical genetics that testing of children should be avoided, unless it can lead to medical treatments, because the child’s autonomy to decide later whether they want to know about their health status should be preserved. Yet, increasingly, parents will know information about the genotypes of their children before birth: do children have a right to know too, even though it might be distressing and stigmatising?

New technologies and knowledge enable us to discover more and more about foetuses, earlier and earlier in pregnancy. Behavioural genetics may give clues about predispositions or abilities which are not associated with disease, but with social and psychological features of individuals such as homosexuality, shyness, anti-social behaviour or intelligence. Pre-implantation genetic diagnosis even enables ‘test tube’ foetuses to be tested prior to implantation in the mother’s womb. At some stage, I believe that limits will have to be placed on how much information is disclosed, and which characteristics are permitted to guide selection. Otherwise, as our techniques become more powerful and if parental demand is the only issue, we will slowly but surely enter the world of designer babies.

Conclusion

Scientists find discussion of designer babies reprehensible, but I see nothing to stop that situation developing over the long term. In the short term, our dilemmas are about increased parental responsibility for the quality of their children. Decisions about testing and termination are potentially highly traumatic: whether couples continue with pregnancy or not, they will live with reproductive decisions for the rest of their lives. It is for this reason that I think we should be cautious about the benefits of genetics. While it is generally true that ‘knowledge is power’, in prenatal screening it may often be the case that ‘ignorance is bliss’.

*Dr Tom Shakespeare is the Director, Outreach at the Policy, Ethics and Life Sciences Research Institute in Newcastle in the United Kingdom.

Endnotes

1. A Asch ‘Prenatal diagnosis and selective abortion: a challenge to practice and policy’ (1999) 89 American Journal of Public Health, 1649-57.

2. T Shakespeare ‘Choices and rights: eugenics, genetics and disability equality’ (1998) 13 Disability and Society, 665-682.

3. D Wertz and JC Fletcher Ethics and human genetics: a cross-cultural perspective, Springer-Verlag, New York, 1989.

4. BK Rothman The tentative pregnancy: amniocentesis and the sexual politics of motherhood, Pandora, London, 1988.

5. A Rogers ‘Having disabled babies will be ‘sin’ says scientist’, Sunday Times, 4 July 1999; TM Marteau and H Drake, ‘Attributions for disability: the influence of genetic screening’ (1995) 40 Social Science and Medicine, 1127-32.