Why I Did Not Send
A NICE Reply
NICE (the National
Institute for Clinical Excellence) is part of the UK’s
National Health Service (NHS). It is an independent
organisation responsible for providing guidance on treatments
and care for those using the NHS in England and Wales.
On 26 August 2003, NICE issued the second draft of clinical
guidelines on the assessment and management of fertility
problems. There was a four-week consultation period, which
ended on 22 September. NICE is expected to put its final
recommendations to the Government in February 2004.
The full version
of the guidelines is 281 pages long. There are 20 chapters,
plus an appendix, of recommendations about infertility
techniques and protocols, most of which are highly technical –
I certainly did not read them all. But, if you are
sufficiently stout-hearted, you can check them out at
www.nice.org.uk/cat.asp?c=20092.
Briefly, the key recommendation
was that women, between the ages of 23 and 39, should be
entitled to have three cycles of IVF treatment free on the NHS
if they have failed to conceive naturally after three years,
or immediately if they have a clear cause for their
infertility and are under 23. This would end the so-called
‘postcode lottery’, whereby some couples already get free IVF
on the NHS, while others, because of their geographical
location, have to pay for it privately.
I did not make a
submission to NICE. Of course, I wanted to respond. I want to
respond to all these sorts of bioethical issues – during the
consultation period, I took part in an hour-long BBC radio
programme on this very topic. But, this NICE consultation
created a problem, or rather a set of at least four problems,
for me.
1] It was a strange consultation
exercise. While NICE said that it welcomed comments from
all-comers, the exercise was aimed mainly at the so-called
‘registered stakeholders organisations’, which are almost
exclusively practitioner groups, like the Royal College of
Gynaecologists and the British Fertility Society. Neither I,
nor the organisations I serve, are registered as stakeholders.
2]
Furthermore, the document’s
rubric stated that, ‘In referring this guideline to NICE for
development, the Secretary of State for Health and the Welsh
Assembly Government have made clear their decision to
standardise access to fertility treatment across the NHS in
England and Wales.’ That is, Westminster and Cardiff saw this
consultation primarily as an issue of equality, to end the
‘postcode lottery’ of NHS provision of infertility treatments.
I would find it pretty hard to argue against ‘equality’ – a
cardinal principle of justice is that equal cases are treated
equally.
3]
The rubric continued, ‘NICE is
not tasked with looking at the affordability of fertility
treatment, nor the social issues around its use. Our job is to
produce a treatment guideline which supports the NHS in
diagnosing fertility problems and, once the diagnosis is
confirmed, managing treatment.’ In other words, IVF and all
the other assisted reproductive techniques are a given – there
were no bioethical arguments that NICE wanted to hear. I
searched the document for words such as ‘bioethics’, ‘ethics’,
‘morals’, ‘thinking’, and ‘philosophy’ – all were entirely
absent.
4]
And instead of presenting a
decently-argued submission with developed themes, with a
beginning, a middle, and an end, all responses to NICE had to
be submitted on the provided e-mail proforma, together with
strict reference to the particular paragraph of the
guidelines. This sort of presentation militates against
anything I would want to, or even could, write. Sadly, this
rigidly-structured, box-ticking type of exercise is fast
becoming the norm for Government and NGO consultations.
These were the
main reasons why I did not write a NICE reply. If you are
disappointed, I am probably more so. However, let me outline
the sort of arguments that I would like to have presented to
NICE.
The Bioethical Objections
The proposal for three free treatment cycles of IVF gives the
procedure a status that it does not deserve. Although NICE
might pretend to be deaf to bioethical arguments, IVF is not
bioethically neutral. IVF inevitably involves experimenting
with human embryos, and discarding vast numbers of them,
already as many as 1.2 million in the UK alone. This is not a
small objection to IVF.#
As well as this
destruction of human embryos, IVF has other bioethical
problems. Chief among these is its failure rate. This remains
at about 80%, though this is usually regarded as a 20% success
rate. But which other medical intervention does the NHS fund
that has such a wholesale failure rate? Would you submit to a
major medical procedure with odds of 4 to 1 against being
successful? For a medical treatment to be regarded as ethical,
and appropriate for widespread use, it must be both more
reliable and less experimental.
Of course, some
men and women are, and some always will be, infertile –
perhaps they produce no sperm, or no ova. This is nothing new.
But society needs to be very sensitive towards such people –
pressing home the subliminal message, endlessly broadcast by
the IVF industry, that you are not a real woman or man unless
you become a mother or a father can be an offensive matter.
For them the ‘over-egged’ carrot of free IVF will become more
like a poke in the eye.
The Medical Objections
Amid this clamour for IVF – which, predictably has been
welcomed by private practitioners of IVF, who will be
lucratively (at £3000 to £5000 per treatment cycle) drafted in
to cope with an overwhelmed NHS – its other costs have been
conveniently sidelined. Yet, IVF typically entails a physical
cost with its constant regimes of injections and monitoring,
white-coated technicians and all the other trappings of
hi-tech medicine. The inevitable super-ovulation treatment is
often uncomfortable, but it can also lead to the serious
dangers of ovarian hyperstimulation syndrome (OHSS). And there
are psychological costs too. These are normally characterized
by heightened stress, and sometimes by relationship failure
between the couple, and with any gamete-donating third
parties. For many, there will also be the crushing
disappointment of IVF failure, which can so easily be
translated as personal failure. Then there are the problems
associated with multiple births – half of all successful IVF
treatments end with twins or triplets. Such births are
associated with maternal health problems, low birth weights,
high rates of stillbirth, neonatal deaths and long-term
disabilities.
And now IVF has
some ‘new’ problems. Within the last year or two a worrying
number of serious conditions associated with IVF and its
variant, ICSI (intra-cytoplasmic sperm injection) have been
reported. Children conceived in these ways have twice the rate
of birth defects compared with naturally-conceived children.
Specifically, the incidence of Beckwith-Wiedermann syndrome
(‘large offspring’ syndrome), retinoblastoma (cancer of the
retina), Angelman syndrome (growth and behavioural problems)
and Turner’s syndrome (abnormal growth and development) is
greater in children conceived by IVF or ICSI. In addition,
miscarriages have been shown to be considerably more common
after IVF than after natural conception.
Even Lord Robert
Winston, one of the UK’s foremost IVF proponents, has warned
against the dangers of using IVF with, for example, frozen
embryos, a procedure that has never been properly assessed.
These concerns beg the question, are there other hidden
dangers and diseases in later life caused by IVF? The truth is
that the long-term risks of IVF treatment have not been
assessed and this has been likened recently to ‘a mass
experiment on children’s health’.
The Sociological Objections
Marriage is not mentioned in the NICE guidelines. That is,
practitioners of assisted reproductive techniques under the
NHS do not need to consider the marital status of the
infertile couple. Yet, for the vast majority of the ‘morally
sensitive’ this is a fundamental issue. Marriage, though
currently under threat from libertarians, is still generally
recognised as the best and safest place in which to conceive
and nurture children. It is interesting to note that LIFE has
recently reaffirmed its commitment to accept and treat only
married couples on its fertility programme (see,
www.lifefertility.co.uk).
Is portraying IVF
as the answer to infertility a technology too far? It will
increasingly encourage the idea that babies can be obtained
‘on demand’, which is another step down the road of the
commodification of our children. We should ask, must
procreation also now be fitted into our already
over-timetabled lives? This technological intrusion into one
of the most profound areas of human relationships tells us a
great deal - perhaps too much - about our values and how we
view ourselves and others, especially our offspring.
And will NICE’s
proposed free IVF encourage the wrong sort of people to use it
for the wrong sort of reasons? That is, are more and more
women choosing ‘voluntary infertility’ as a lifestyle and then
expecting IVF to fix it later. Certainly, ‘career women’
continue to put off childbirth, and it is noticeable that the
abortion rate among these twentysomethings is still the
highest of all age groups. So, as these thirtysomethings
decide to settle down to family life, and others decide to
start families with new partners for a second time, it must be
asked, is IVF being increasingly used for less-than-serious
reasons? Herein is the completion of a rather ominous circle
of medical intervention - women are already using medical
means (abortion, morning-after pill, etc.) to stop pregnancy,
now, the NICE recommendations want more women to use other
medical means (IVF, ICSI, etc) to start pregnancy.
Our society has
sent out the wrong signals to couples. The catchphrases, ‘the
freedom to choose’, ‘total control of your fertility’, ‘the
professionalisation of parenthood’, have all created a climate
in which IVF is seen as the answer for those who are
voluntarily and involuntarily sub-fertile. But IVF is not this
panacea. Sadly, if IVF is increasingly regarded as the final
hope of many, then many will be disappointed.
The Political Objections
The NICE proposals raise
other questions. Such as, is it right for a publicly-funded
health service to offer such provision? Are these the values
and priorities that we want the NHS to uphold? Is human
reproduction an area in which society should be making
decisions? Clearly the Government has been loath to make such
judgments – that is why NICE was handed this hot potato in the
first place.
Even if the NICE
recommendations are accepted, it is far from clear if the
Government will stump up the necessary cash. And the bill
could be huge - some have estimated that the price tag would
be £100m, or even as high as £400m, each year.
In recent years
the NHS has moved towards a more decentralised structure
whereby local needs and priorities are assessed and then
funded according to local spending plans. If local
decision-makers decide that IVF is neither a priority, nor
good value for money, will anything change? In other words,
should a national IVF policy even be contemplated, and could
it ever work?
Nevertheless, if
the Government is serious about treating infertility, rather
than simply alleviating it with IVF, then it should look at
some other issues. Delaying childbirth is an undoubted problem
– the mother’s age is a major factor in infertility and the
average age of first-time motherhood is now approaching 30.
Yet Government does little to encourage young couples to start
families by, for example, tax breaks and other incentives –
the relentless push of this Government has been to get
everyone, young women especially, into work, preferably
full-time. Contrary to this zeitgeist is that immovable truth
that motherhood is wonderful, important and fulfilling – and
biologically, the sooner it is started the better.
Another area the Government should proactively tackle is
couples’ preconceptual health. There is a growing corpus of
evidence to show that sub-fertility is exacerbated by stress,
obesity, drug abuse, sexually-transmitted diseases, smoking,
and so on. Spending money to ameliorate these problems would
be an ethical, cost-effective and successful way of helping
the childless.
The Legal Objections
While it cannot be
denied that IVF is legal in the UK, none can be content with
the legal problems it has generated. Every month someone is in
court challenging the ‘ownership’ of frozen human embryos
after couples split up, the mix-up of embryos during IVF
treatment, posthumous fatherhood, the deceit and shenanigans
of IVF doctors, and so on.
Indeed, the courts
are now being pushed to decide questions of morality rather
than law. Parliamentary responsibility is being
undermined. And while the head of the Human
Fertilisation and Embryology Authority (HFEA) is pressing for
Parliament to revise the Human Fertilisation and Embryology
Act 1990, there seems to be little political will to do so.
The Objective Objection
Faced with the objections outlined above, can any doubt that
we would all be better off without IVF? What a mess –
bioethically, medically, sociologically, politically and
legally- it has generated. We certainly do not want more of
it, as NICE is calling for. Even so, in the interim, common
sense may prevail. Money, specifically, lack of it, will
probably squash these NICE proposals. Certainly during the
radio phone-in programme in which I participated, the vast
majority of callers considered the proposals foolish on the
grounds of cost alone. When it comes to granny’s hip operation
versus some IVF, there is no contest in the minds of most
people.