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Opinion,
Comment & Reviews
Ante Natal diagnosis |
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Diagnosing
the problem: a commentary on preimplantation genetic diagnosis
By Ann Furedi and Frank Furedi
Ann Furedi and Frank Furedi argue that couples, not doctors
and experts, are best placed to decide whether to have a child
with an inherited disability. This is an edited version of
their submission to an official public consultation on preimplantation
genetic diagnosis.
Preimplantation genetic diagnosis (PGD) has great potential
for preventing inherited genetic diseases. The technique was
developed a decade ago, to meet the needs of those with an
increased risk of passing on an inherited disorder who wanted
to maximise their chances of having children free from the
condition. It is a two-stage process, in which in vitro fertilisation
(IVF) is used to create embryos that are then tested for a
particular genetic disorder or to establish their sex (where
the disorder is sex-linked). Embryos that are not affected
by the disorder can be selected and transferred to the uterus
in the hope that a normal pregnancy will develop.
PGD does not guarantee a healthy child. It is not 100 per
cent accurate and, even when it works, it is possible that
the child could be affected by a disorder other than that
for which it was tested. Nor does PGD protect against the
hazards of pregnancy and birth that can cause a child to be
born with a severe abnormality. But PGD does offer some couples
affected by specific genetic abnormalities a chance to start
a pregnancy on the same basis as anybody else - and that is
cause for celebration enough.
Before the development of PGD, the choices facing couples
who knew they were affected by genetic defects such as cystic
fibrosis, Duchenne muscular dystrophy, and Huntington's disease
were stark. Many decided not to have children rather than
take the risk of bearing an affected child. Others would take
their chances, proceed with a pregnancy and, when it was sufficiently
advanced for the fetus to be tested for a particular condition,
seek diagnosis where possible through antenatal tests like
amniocentesis and request the termination of affected pregnancies.
Many of those who first benefited from PGD had endured several
late abortions, their hopes of a normal child repeatedly dashed
after five months or so of pregnancy.
But perhaps surprisingly for a clinical procedure with the
potential to alleviate so much distress, PGD is currently
under ethical scrutiny. Faced with a growing public interest
in genetics and concerns about the 'abuse' of technologies,
the Human Fertilisation and Embryology Authority (HFEA) is
conducting a public consultation to test public attitudes
to PGD. An HFEA working party has issued a document that 'aims
to consult on whether, given the potential use of PGD, there
are any uses which should not be permitted or which should
only be permitted under certain circumstances'.
This consultation will obviously attract the attention of
those who would outlaw all tampering with nature. It is also
likely to attract considerable comment from an increasing
vocal minority which believes that antenatal screening to
avoid the birth of those with genetic defects is eugenic in
intent. Given this, it would be wrong for those of us who
applaud such developments to absent ourselves from the debate.
In this spirit, we outline here several principles that we
believe should underpin the discussion.
The consultation document is, like most HFEA consultation
documents, informative and balanced in its presentation of
the issues. Many questions are put, many issues posed - but
what is of particular concern is its unspoken assumption that
PGD needs to be regulated. The main aim of this document seems
to be to identify uses of PGD that should either not be allowed
or only be allowed in specific circumstances. It seeks to
define what might constitute an abuse of PGD and, having come
to a conclusion about abuse, decide on how such abuses may
be prevented. Issues raised by the paper include, for example,
who might have access to PGD and whether genetic conditions
considered sufficiently 'serious' for testing should be defined
- sex selection for social reasons is already banned. Concerns
are raised about whether it is appropriate for embryos that
carry a condition but are not actually affected by it to be
rejected, and whether it can ever be ethical to test for conditions
that may only affect a person late in life.
One issue that has already attracted controversy is whether
it can ever be right deliberately to cause a child to be born
with a disability - considering the hypothetical case of a
couple who preferred the use of genetically abnormal embryos
to healthy ones.
Any one of the issues raised in the paper could fuel endless
discussion at a seminar on medical ethics. But we must keep
a sense of perspective about not just what is possible (by
the furthest stretch of the imagination), but what is probable.
PGD is a technical service with the potential to affect positively
the lives of families, and it would be a tragedy if, distracted
by concerns about 'abuse' and the need to 'restrict', we lose
sight of the benefits it offers. We feel that a discussion
about the acceptability of PGD should be built on by the following
beliefs.
Developments in PGD technologies and services are unequivocally
beneficial to individuals and to society. Most people wish
to maximise their chances of raising a healthy child, and
for those at increased risk of bearing a child with a genetic
disorder PGD has the potential to lift their reproductive
experience out of a nightmare of uncertainty.
Regulations concerning PGD should be 'permissive' rather than
'restrictive' and should be primarily concerned with protecting
couples from exploitation, by those who seek to profit from
fertility services, and ensuring that services operate at
the highest possible standard. It seems bizarre to concern
ourselves with the need to restrict access bureaucratically
to a technique that requires such endurance from those who
undergo it - and is so expensive to provide. Fears that IVF
would lead to frivolous requests for treatment from women
who disliked sex have never been born out in practice. Why
should we assume that people are so perverse as to wish to
engage in PGD without 'good reason'?
We would urge that the HFEA steers decisively away from any
attempt to define what genetic conditions constitute a 'good
reason' for permitting PGD and which do not. The decision
about whether a condition is reason enough can only be decided
by the couple who face the prospect of raising an affected
child. Ethicists, HFEA members and doctors may have well-formed
and informed opinions, but at the end of the day they return
to their own homes and families. The couple they allow or
refuse access to PGD live with that decision for the rest
of their lives. A discussion about a reasonable course of
action in the management of specific conditions is best left
to the judgement of a couple and those involved specifically
in their care.
Couples forced to reflect on their unique circumstances are
best placed to make the decisions that affect themselves and
their families. They do not need ethical 'experts' to impose
a moral structure on their decisions. People are generally
disposed to display rational judgement about serious decisions,
and act with a sense of conscience. Sometimes, the option
chosen by a specific couple may run against the current of
public opinion. It is even possible to imagine a situation
where one feels morally outraged by the reproductive desires
of a couple deciding to use this technology. Many of us will
be perturbed by the thought of a couple deliberating 'creating'
a deaf child. But most of us would vigorously oppose any attempt
to impose regulations that meant that a disabled couple could
not 'naturally' conceive a child even though it were bound
to be disabled. And we would certainly oppose compulsory antenatal
screening or compulsory abortion following a positive diagnosis
of a genetic problem. Our views should be informed by the
principle that people should be free to make their own reproductive
choices independently of the state.
On the other hand we should categorically reject one concern
aired in the consultation document, and vocally expressed
by some activists for disability rights - that PGD per se
devalues the lives of individuals affected by a genetic abnormality.
The choices that people make about their own lives and families
do not represent a statement about other people. Couples who
decide not to have children are not usually antagonistic to
children in general, just as couples who have just one child
do not do so to make a statement against large families. Those
who aspire to have fully-abled children do not devalue disabled
children - any more than those who have children that are
born suffering from a genetic condition devalue those who
are born healthy.
The overriding ethical principle that should inform discussions
about the new reproductive technologies is that the right
of individual choice should be respected - unless, in the
exercising of that choice, the rights of another individual
are violated.
Those responsible for drafting guidance on PGD should assess
carefully which areas are genuinely in need of ethical regulation
and where regulations are considered simply because some believe
it is inappropriate for such matters to remain unregulated.
PGD may appear to deal with decisions about the creation of
life - but then so do the decisions we take about when and
with whom we have children. Hopefully the HFEA will never
be charged with providing a regulatory framework for this.
The consultation document on PGD is available on the HFEA
website, www.hfea.gov.uk.
Responses are to be submitted to the HFEA by 31 March 2000.
Ann Furedi, director of communications at the abortion provider
British Pregnancy Advisory Service, and Frank Furedi, reader
in sociology at the University of Kent at Canterbury, are
writing in a personal capacity.
An edited version of this paper appears in LM magazine No.
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