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  Do New Technologies Raise the Spectre of Eugenics?
By John Gillott

Introduction

What follows is the text of a paper given at a conference organised by Pro-Choice Forum called 'Issues in Pregnancy Counselling: What do Women Need and Want?' The conference was held at Ruskin College, Oxford in May 1997. It's aim was to give students, academics, service providers and others interested in ensuring pregnancy services meet women's needs, the opportunity for a critical discussion of the provision of counselling as part of these services.

John Gillott

The brief answer to the question is: it depends what you mean by 'eugenics'. This issue will be addressed at the end of the paper. What is clear is that the further development and application of new reproductive technologies is a constant source of discussion, and some unease. To begin with I want to outline some of the issues in the news as they touch upon new technologies relating to genetic science.

1. Issues in the news

Sections of the professional community wonder whether the law on late termination for foetal abnormality should be tightened, specifically whether terms such as 'substantial risk' and 'serious handicap' should be specified in more detail.

Attempts have been made to restrict, through legislation, termination for Down's syndrome.

Lord Winston has extended his work on pre-implantation genetic diagnosis to cover late-onset cancer. Ruth Deech, Chair of the Human Fertilisation and Embryology Authority, has expressed concern about creating 'babies to order'.

In Germany, concern has been expressed at the highest level following a doctor's request to carry out the country's first trial of pre-implantation genetic diagnosis.

Recent studies have suggested that parental choice is being undermined by new technologies and professional practice. A report by the National Childbirth Trust issued in February 1997 claimed that the 'right of parents not to have ante-natal testing is being undermined by health professionals.' A study by four leading UK authorities on genetics found that professionals in the field were not, in the opinion of the authors, following the official policy of non-directiveness in genetic counselling.(1)

In the press comment on both reports, the argument was made that if current practice was, as described, directive, then it was 'eugenic' in character. At a more general level, the idea that new technologies raise the spectre of eugenics connects with the popular idea that science is going too far. In order to put some of the contemporary concerns in perspective, I begin by looking at how the science and the related services have developed.

2. The science and the service

Ante-natal testing

This service is now available for an increasing number of conditions, the testing procedures are becoming more accurate, and the tests themselves can be carried out at earlier stages of pregnancy than was previously the case. It will soon be possible to isolate a few foetal cells from the mother's blood. The advantage of this procedure will be that it carries no risk of miscarriage.

How do people come to use the service? Broadly, three classes of people are seen:

Parents who have already had an affected child and know that they are at high risk for producing another child with the same condition.

Mothers with no family history but who are at higher that average risk of having a child with a specific condition for a particular reason. Examples include maternal age and exposure to noxious agents.

Pregnant women undergoing ante-natal screening which detects a problem in the foetus.

Pre-implantation genetic diagnosis

The main type of PGD involves taking one or two cells from an eight-cell embryo and testing them for a suspected genetic abnormality (this does not destroy the embryo as cells are toti-potential at this stage of development, so one or two can be removed and the embryo later implanted). Approximately three embryos free from the condition are then implanted.

The field is very new, in fact it is still more akin to academic research than a service to the public. It was first developed at the Hammersmith Hospital in London in 1990-2. Globally, as of January 1997, 328 embryo transfers had followed PGD, and approximately 60 babies had been born as a result.

The first conditions to which it was applied were X-linked conditions such as muscular dystrophy. Next, the procedure was applied to recessive conditions such as cystic fibrosis and also to chromosomal translocations. Most recently, and this is the cause of some controversy, PGD has been applied to familial breast cancer via testing for the genetic mutation BRCA1.

How do people come to use the service? Primarily, families use the service because they know they are at increased risk for having a child with a genetic condition, want to have a child free of the condition, but also wish to avoid abortion. In other words, the service is patient led. This is also the case in the recent breast cancer case: the patient needed IVF because of ovarian problems (linked to BRCA1), and simply requested that the eggs the doctors chose to implant in the normal course of IVF also be tested to ensure they were free of the BRCA1 mutation. In addition to ensuring a child without a raised risk of breast cancer, this procedure had the added benefit of eliminating the condition from future generations of the family.

Under pressure to test?

The ethos of the genetic services is 'non-directive'. I will discuss this in more detail later. I want, for the moment, to look at whether or not people are pressurised into testing.

In relation to PGD, the answer is clearly no. What about ante-natal testing? Of the three classes of people seen by the service, the first class are clearly not under any pressure to test-they want to have access to testing. Indeed, they want more of it and would like it to be available earlier in pregnancy. But even for the other two classes of people, the evidence presented by the National Childbirth Trust seems to count against their claim that people are pressurised into testing. Only 10% of women said they felt pressurised into taking a test, and only 1% refused. Broadly, women want the service to be available because they want to avail themselves of tests that are on offer. This does not mean that the service is free from problems, but these should not be exaggerated. Also, it is perhaps the case that the most basic problem of all will prove very hard to resolve because it is inherent in the situation as it presents itself: professionals see their job as one of testing to see if there is a problem; women go into the service looking for confirmation that the baby is allright. These different expectations are bound to colour attitudes toward the service.

3. The legal position

Selective termination for foetal abnormality

The Abortion Act 1967 was amended by the Human Fertilisation and Embryology Act 1990. Previously, the upper gestation at which abortion for foetal abnormality could be provided was limited by the Infant Life (Preservation) Act 1929, but this restriction has been removed and such abortions are now possible at any gestation if the specified criteria are met. The Royal College of Obstetricians and Gynaecologists spells out what those conditions are and what they are taken to mean.

The amended Abortion Act allows two medical practitioners, acting in good faith, to certify that a pregnancy can be terminated at any gestation if '..there is a substantial risk that if the child were born it would suffer such physical and mental abnormalities as to be seriously handicapped'. If these criteria are not met, termination after 24 weeks is permissible only if necessary to prevent grave permanent injury to the physical or mental health of the pregnant woman or if the continuation of pregnancy would involve risk to the 'life' of the pregnant woman, greater than if the pregnancy were terminated. By contrast, up to 24 weeks, the Act allows a pregnancy to be terminated if 'the continuation of the pregnancy would involve risk, greater than if the pregnancy were terminated, of injury to the physical or mental health of the pregnant woman or any existing children of her family.'(2)

There have been attempts to tighten the law or to define it more sharply: in one case, an attempt was made to define 'serious' in relation to whether or not the 'child to be' would have a life worth saving through medical intervention; in another an attempt was made to define 'serious' by reference to whether or not it would be legitimate to withhold treatment from a child in the same state as the embryo, even though this might result in death.

A number of factors make it likely that further attempts might be made to tighten up the law: existing law and moral thinking grants moral status to the foetus, especially in the third trimester-termination is seen as a necessary evil; some professionals feel unhappy, even insecure, about proceeding without clearer guidelines; and in society at large, political and social trends point toward restrictions on termination on the grounds of foetal abnormality-especially important here is the rise of disability politics and also, among the young in particular, a sympathy for the defenceless which is seen to include foetuses as well as animals.(3)

Pre-implantation genetic diagnosis

PGD is legal in the UK and the USA, although in the latter, public funds cannot be spent on the service. In other countries-such as in Germany-it is illegal. In the UK the procedure is subject to regulation by the HFEA, although the exact terms of regulation are not all that clear.

The view of the Genetic Interest Group (GIG)

GIG does not believe that sanctioning termination for abnormality leads to discrimination against disabled people. The experience of GIG members groups is that parents who use genetic diagnosis to avoid the birth of a child with a genetic condition, after having a first child with the condition, love the First child no less as a result of the choices they make. In the case of serious genetic conditions, this kind of choice is often motivated by a desire to be able to provide the time and resources the First child needs. In his book The Lives to Come, Philip Kitcher argues, persuasively, that what holds at the level of parental attitudes can also hold at a societal level. He gives the example of the way in which the Greek Orthodox Church has a positive programme to reduce the birth incidence of thalassaemia; while at the same time care is provided by society for those living with the condition.(4)

GIG firmly believes that individuals must be free to make their own decisions because they are the ones who will have to live with the consequences of those decisions. In relation to selective termination for foetal abnormality this point is especially important. The choices that are made are not 'constructed' by some grand 'eugenic' discourse as some critics contend, rather, they are based on the real experience of living with a family history of a genetic disorder. If any 'list' were drawn up of conditions for which ante-natal testing and termination on the grounds of foetal abnormality was or was not allowed, people would be denied the opportunity to make the choices appropriate to their family. Such a denial of choice would be discriminatory, and if, in particular, women were denied the opportunity to test ante-natally for certain conditions, it might force some to have abortions who otherwise would not. Accordingly, GIG opposes any attempt to define a 'list'.

In relation to pre-implantation diagnosis, the issues are more straightforward: if it is a matter of implanting three fertilised eggs out of a greater number, it is common sense to implant those free of known is possible to maximise the chances of a healthy child it is perverse not to do so. There is no 'slippery slope' because there are no difficult cases: it is good to avoid any and all disease, and that includes predisposition to disease in later life. Accordingly, GIG opposes any and all attempts to restrict the range of medical conditions for which pre-implantation diagnosis can be performed. Of course, PGD is not an easy procedure, and as such it is highly unlikely that women will start demanding it for what the critics of the procedure call 'trivial' reasons.

4. Selective termination, non-directive genetic counselling, and 'eugenics'

Selective termination

Does pre-implantation genetic diagnosis and/or ante-natal testing rest upon the assumption that the goal of the service is the avoidance of disability-and if so is this a problem? Consider the following three views.

It is unlikely..that prenatal diagnosis would have been researched in the way it is just to give parents reassurance, or if most parents with an abnormality chose to continue pregnancy. The 'enormous potential for the avoidance of serious genetic disease and congenital abnormality' (Weatherall, 1992), can only be realised in most cases if women who conceive foetuses with such genetic disease or malformation terminate the pregnancy.
Helen Statham

The predominant aim of genetic testing, both at pre-implantation and pre-natal stages, is to reduce the incidence of genetic disease in the next generation..Genetic testing can thereby enable the avoidance of damaging psychological effects to the parents of having a seriously disabled child..the savings to society can be immense in terms of financial costs and the depletion of scarce resources related to the education, healthcare and community support of the disabled.
John Harris

Population-based screening services are organised and evaluated in a way that suggests that the primary objective is carrier detection and termination of affected pregnancies. Although the importance of informed decision-making is frequently acknowledged in screening programmes, this is not reflected in evaluations of screening programmes. The need to address this is urgent.
Theresa Marteau and Elizabeth Anionwu

I think that Helen Statham is undoubtedly right in relation to the facts of the matter-the service is premised on the idea that on the whole parents will choose to avoid serious disability. This point is recognised by Harris, and Marteau and Anionwu also. For Harris this is a good thing. Is his position right and is it consistent with choice?

If we take Harris to mean that it is a good thing to seek to reduce the suffering caused by genetic disease, then he is undoubtedly right and his position is consistent with the historic goals of medicine. But what about choice? Certainly, coercion must be avoided. Choice at all levels must be upheld. But we must also reflect on the nature of the choices most people want to make. Following the points made in the conclusion to section three, it is a fact that the choice most people want to have is the choice to avoid the birth of a child with a serious genetic condition (of course, many people would prefer to have alternative, therapeutic options, to termination). The ethos of the service reflects this fact which happens also to be consistent with a public health/cost-saving agenda. In other words, that the service has implicit values is not a problem since those values-to improve health-are shared by most people.

Non-directive genetic counselling

Genetic counselling is concerned with facilitating informed reproductive decisions. Following the eugenic experience prior to World War II, the emphasis has always been placed firmly on the 'non-directive' part. This is as it should be. But I would introduce some caveats:

There is a danger of making anything appear directive: some say presenting testing as a part of ante-natal care is directive and therefore wrong; or that clarifying likely implications of a condition is directive; or that ensuring risks are understood is. All these procedures seem to me to be perfectly reasonable features of patient care, and quite consistent with the goal of informed choice. I note that in a recent study on the issue, patients expressed satisfaction even if they thought aspects of their care were 'directive'.(5)

We can't get away from the fact that the primary 'choice' offered is the avoidance of having a child with a genetic condition-and that this is the choice made by most people. If this is directive, then non-directive genetic counselling is impossible (a majority of delegates to the Third European Meeting on the Psychological Aspects of Genetics, held in 1992, took this point of view).

We should also question whether a strictly interpreted understanding of non-directiveness is a good thing. If a family is unaware of the nature of and implications of the condition that may affect the child, it is the duty of the health professionals to present them with the facts if the goal is informed choice. As already discussed, it is the common experience of GIG members that while they dearly love a First child with a condition, they seek to avoid having more children with the condition. That experience is not available to the family First time around, and there are good reasons for professionals to make it available.

'Eugenics'

I have argued in this paper that the extension of new reproductive technologies does carry with it certain assumptions about outcomes. Specifically, implicitly in the case of ante-natal testing, and explicitly in the case of PGD, the assumption is that the aim of the service is the avoidance of disability. Inevitably, and perhaps not undesirably, I have argued, this places a limitation on the possibility of offering truly non-directive genetic counselling. The conclusion some would draw from this is that the service is 'eugenic'. Is it?

As I said at the beginning it depends what you mean by eugenics. The term is clearly used with the intention of problematising aspects of, or the whole thrust of, new reproductive technologies. In this sense I reject the term, since I see the development of the service as a 'Good Thing' as it provides families with information to make their choices.

But I also reject the application of the term because I believe it confuses and obscures. Modern genetics is an aspect of medicine and embodies the progressive and humanitarian goals of the discipline. It embodies the value that it is good to be free from genetic disease, but it does not judge people who suffer from a genetic condition to be morally inferior. By contrast, the eugenics movement that was influential from the turn of the century up until World War II held people with genetic conditions, in so far as it had any real scientific understanding of these matters, to be morally inferior. It was also deeply imbued with racial and class prejudice-believing whole groups of people to be of inferior 'stock' and responsible for all manner of problems in society. To compare modern genetics in any way with this history does a disservice to medicine and to our understanding of history.

(1) Michie, S. et al, 'Nondirectiveness in Genetic Counselling: An Empirical Study', Am. J. Hum. Genet., 60: 40-47, 1997.
(2) Royal College of Obstetricians and Gynaecologists, 'Termination of Pregnancy for Fetal Abnormality, in England, Wales and Scotland', London, 1996, p.5.
(3) These points are discussed further in 'A briefing paper on ante-natal and pre-implantation diagnosis, embryo research and contemporary abortion issues', available on request from the Genetic Interest Group.
(4) Kitcher, P. (1996), The Lives to Come: The Genetic Revolution and Human Possibilities, London: Allen Lane, The Penguin Press, p.85.
(5) Michie, S. et al, 'Nondirectiveness in Genetic Counselling: An Empirical Study', Am. J. Hum. Genet., 60: 40-47, 1997.
 
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