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Ante Natal diagnosis |
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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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