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Reproductive technologies |
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Ethics
and infertility treatment: should we have the 'right to reproduce'
By Juliet Tizzard, Naomi Pfeffer and Laurence Shaw
Introduction
What follows is a transcript of papers given at a seminar
held at Kent University Law School in the Autumn Term 1997.
The seminar was organised by Ellie Lee, a student at Kent
University and Co-Ordinator of Pro-Choice Forum, to give staff
and students the opportunity to discuss issues surrounding
fertility, ethics and the law.
Juliet Tizzard
A large part of the discussion around infertility treatment
today regards access: what services should be accessible and
who should have access to them. Quite often this leads to
discussions about the ethical acceptability of the various
forms of assisted conception. But there is also debate about
the patients themselves, as well as the treatments they seek.
It is often assumed in the rather emotive discussions in the
newspapers about this issue that there is the demanding patient
on one side and a reasonable, thoughtful commentator on the
other. Patients are often characterised as thinking they have
a 'right to reproduce' or a right to a particular kind of
treatment. I do not think that it is necessary to talks of
rights in order to argue for universal provision of infertility
treatment or equality of access.
Rights, in the context of reproduction, is a difficult concept.
Rights imply that something ought to be the case: that we
ought to have access to something where it is not actually
the case. They are often described as 'moral rights'. When
people say 'We should have the right to reproduce' or 'We
should have the right to health care' it is often in the absence
of that being the case. The problem with a right to reproduce
is that it implies that someone has a corresponding duty to
provide for that right. But upon whom is it incumbent to ensure
that that right is realised? If you are denied it, who do
you blame? Where is your protection and who do you have recourse
to? If you do not manage to reproduce through infertility
treatment can you blame your doctor for failing in his duty
to meet your right to reproduce?
In English law there is no right to reproduce, nor is there
a right to access fertility treatment. The contrary is true.
The law restricts quite considerably access to fertility treatment.
The main law in this area is a statute called the Human Fertilisation
and Embryology Act. It was much debated during the 1980s and
finally became law in 1990. It is concerned with a number
of issues, one of which is access to infertility treatment.
An interesting discussion went on during the passage of the
Act, which culminated in a clause in the Act, known as the
'welfare of the child' clause. This states that 'a woman should
not be provided with infertility services unless account has
been taken of the welfare of any child who may be born as
result of the treatment, or of any other child who might be
affected as a result of the birth'.
This might seem like a fairly insubstantial part of the Act.
I want to argue it is very important, both politically in
the passing of the Act, and subsequently in the way services
are provided. The welfare of the child clause is effectively
a way of assessing patients, to see if they are suitable for
treatment. This assessment is not based on clinical grounds,
but on aspects of the patient's life which are thought to
be relevant to their request for treatment. They include an
assessment of the history of the patient - whether they have
a criminal record, for example - the family circumstances
of the couple, the strength of their relationship and various
other things that may been seen as an indication that they
may or may not make good parents.
The welfare of the child is not concerned with restricting
access in terms of funding. There are plenty of other examples
of how this takes place. Instead, it is about putting the
doctor in a position where he has to assess the suitability
of that patient or that couple for treatment. If this is the
reality of provision under the Act, was it really the intention
of it? It is worth looking at how this clause became part
of the Act.
The welfare of the child was never really mentioned in the
Warnock Report, which was published in 1984 as a pre-cursor
to this piece of legislation. In that report Mary Warnock
did not take a lot of time to discuss the welfare of the child
or the restriction of access to infertility treatment. Nor
was in mentioned in the White Paper, or the initial Bill.
It came about when a Peer, Lady Saltoun, became concerned
about IVF being available to people who were not married -
unmarried couples, single women and lesbians - and she indicated
great concern that IVF would be offered only to those who
were married. She tabled an amendment to the Bill which said
that no embryo should be replaced in the uterus of a single
woman.
Interestingly enough, that amendment fell by one vote at the
Committee stages of the Bill, but the response from the Lord
Chancellor was to accept the spirit of the amendment. He said
'It would be clearly unfortunate if this Bill was seen in
any way to be conflicting with the importance we attach to
family values.' His response was the welfare of the child
clause. It seems that whilst government did not want to put
something overt in the legislation which defined who should
and who should not be allowed to have treatment they did wish
to ensure that there were some more subtle limitations placed
on access to services.
That is how the welfare of the child came into the Act as
a clause. How it works in practice is very variable, as many
people working in the field will tell you. The responsibility
to look out for the welfare of future children belongs to
the assisted conception unit, or the consultant in charge
of that unit. That welfare, of course, can be interpreted
in a wide range of ways. What is meant by taking adequate
account of the welfare of the child? Is it contrary to a child's
best interests to be born into a one-parent family or into
a lesbian relationship? What about to a woman with a history
of prostitution? It has to be said that these kinds of cases
are very rare, but it does happen, and the welfare of the
child clause is there to deal with exactly that kind of circumstance.
It therefore puts the responsibility onto the clinical team.
There is no list in the Act. There are no guidelines from
the Human Fertilisation and Embryology Authority which say
which people should be treated and which should not. The emphasis
is on the medical profession to make the decision. This raises
problems about how these people might assess the welfare of
the child - a child that is not yet in existence and may never
come into existence. I think there are some philosophical
problems with that.
Is there a difference between assessing the welfare of an
existing human being and assessing the welfare of something
that does not even exist? You could say it is the same, but
I think it throws up some problems. It requires contemplating
a future scenario that may never arrive. The issue that moral
philosophers always throw up is 'Is it better to not have
been born?' How can we justify that someone would do worse
by not being on the planet than being in even quite bad circumstances?
Can it be logically argued that they would be better off never
having been born, particularly when what we are talking about
in practice is being born into a single parent family? It
seems to me very difficult to argue that not being born is
better in this circumstance. Looking after a child's welfare
is therefore a difficult issue.
There is very little published data on how the welfare of
the child is assessed in practice. One exception is King's
College Hospital in London, which carried out a two-year audit
of assessment of the welfare of the child in the clinic. As
far as I know this is not published, but was referred to in
a speech given recently. In one year King's saw 1 500 patients
and were concerned about 77 of them. Of these 46 were treated,
6 refused and another 25 had the decision postponed to be
made at a later date.
So it is certainly true that treatment is postponed or denied
on the grounds of the welfare of the child clause. Since this
information is not published, it is difficult to know what
those cases were, but I have heard talk in other places of
a woman who, when younger, had three children and an abortion.
The children were put into care, because she could not cope.
She presented for treatment 25 years later, with another partner,
having started her life afresh. The case caused a great deal
of controversy in the clinic, where the consultant wanted
to treat her, but the ethics committee would have nothing
to do with it. The reasons given were that the social work
team involved with the case thought it not advisable to take
such a risk, on the grounds that there may be problems subsequent
to her having a child.
Different clinics approach the issue differently. Some have
a reputation for being very liberal and treating almost anyone.
Others are more strict. These perceptions are based on hearsay
though, since information on why patients are accepted or
not is not written down. Most clinics say they will treat
on a case by case basis, which makes it difficult to see what
the criteria are.
The only example I know where this has been tested in the
courts was by means of an application for judicial review
in 1988. This application was refused by the judge. It concerned
a woman who had a criminal record and a history of prostitution
and had been turned down for adoption. She went to St Mary's
Hospital and was put on the waiting list for IVF treatment.
Once they found out about her history, they took her off the
waiting list. She was not granted a review of that decision
on the grounds that she had been given chance to answer the
case put against her by the hospital ethics committee, and
that there was not a blanket policy of refusing treatment
to people with in circumstances. This raises some interesting
questions about what authority you might go to if you are
turned down for treatment and feel you have been treated unfairly
by an ethics committee.
The welfare of the child, then, is interpreted in may different
ways in the clinical context. I think what is new about it
is that in practice doctors are being asked to do something
that they have rarely been asked to before: to make an assessment
of their patient on grounds which are not clinical. They are
making an assessment of whether people would make good parents
- in effect, whether they are good people. It has been discussed
that perhaps the criteria used for adoption should be used,
which are quite strict, or that there should be looser rules
than this. It has caused a lot of controversy, and given the
indeterminacy of the clause in the legislation no-one has
found a clear and consistent way of deciding about who gets
treatment.
Naomi Pfeffer
I am unhappy about the idea of the 'right to reproduce', because
as the previous speaker pointed out, in law there is no such
thing as the right to reproduce. Why then do people talk as
if there is such a right? Moreover what are the costs of this
careless talk? Debates on whether or not women have the right
to reproduce allow participants to ask whether and which involuntarily
childless women should be allowed to receive treatment which
may make them a mother. Many people seem to enjoy scrutinising
involuntarily childless women's lives to see if they deserve
to have a child. There is a widespread, unstated belief that
infertility is associated with immorality and fecklessness.
Hence the Human Fertilisation and Embryology Act charges medical
practitioners to consider the interests of a child conceived
as a result of treatment. It does not however oblige them
to think about the wellbeing of their patient.
According to the Sixth Annual Report of the Human Fertilisation
and Embryology Authority (HFEA), during the fifteen months
from 1 January 1995 to 31 March 1996, 1 955 babies were born
as a result of donor insemination, and 7 307 babies as a result
of IVF and embryo transfer. From this data it looks as if
around 7 500 babies are born each year in Britain as a result
of medically assisted conception, compared to around 600 000
babies conceived through heterosexual intercourse and brought
to term (around 180 000 pregnancies are terminated in Britain
each year). In effect, the overwhelming majority of women
who become mothers do so without having their moral worth
scrutinised. Their affairs and innermost secrets remain private,
unlike women seeking medically assisted procreation, who are
often denied treatment because they are considered unsuitable
as mothers. Yet an overwhelming majority of children are born
to women whose suitability for motherhood is not tested. Moreover
many of these women would not pass inspection of a hospital
ethics committee or fulfil the criteria of health acre purchasers.
The birth statistics undermine the legislators claim that
one of the main purposes of the Human Fertilisation and Embryology
Act is to protect the interests of children.
The right to reproduce nontheless is an issue some people
get very excited about; they have a lot to say on the topic.
Unfortunately there is no agreement on who should hve that
right bestowed upon them. The Conservative government's reforms
of the NHS encouraged the local exercise of discretion, the
operationalisation of all types of prejudice which some commentators
euphemistically call, rationing by postcode. Repeated surveys
carried out by the College of Health have demonstrated the
extent of the variations in purchasing behaviour of NHS health
Authority purchasers. Some, but not all, exclude people who
have secondary infertility. Age limits range from 35 to 42
for women; some but not all impose age limits for men. Arbitrariness
creates inequalities, and undermines the principles and values
of the NHS. These include equity and the right of every citizen
to consideration, irrespective of their personal status.
An important distinction, often overlooked in debates on rights
to health care, is that between procedural rights and substantive
rights. In law, people do not have a substantive right to
medical treatment. Moreover no doctor can guarantee a patient
a baby. The success rate for IVF is around 16 per cent. Many
people are bound to be disappointed. This applies to a lot
of patients. Yet in the context of medically assisted procreation
a lot of fuss is made about substantive rights, and whether
or not women should be allowed to have them. There is no discussion
of whether or not women cancer patients are unreasonable in
demanding treatment. However when cancer treatment patients
consult a doctor, they are not exercising a substantive right,
but a procedural one. They are asking for, and hopefully receiving,
the right to have their condition considered fairly for the
purposes of NHS investigation and treatment. These rights
are enshrined in the Patients Charter, No-one is, or can be,
guaranteed a cure.
In considerations of access to infertility treatment, I want
to encourage people to think in terms of procedural rights.
What involuntarily childless men and women are seeking from
the NHS is not the right to reproduce, but the right to have
their condition examined fairly. That is a right available
to all British citizens. We enjoy treatment under the NHS
by virtue of our citizenship. When we start talking in terms
of procedural rights not substantive ones, it is possible
to make a stronger case as to why involuntarily childless
women and men should be afforded a reasonable share of NHS
resources.
Talking about procedural rights may also reduce the stigma
of infertility. There is a tendency to portray involuntarily
childless women seeking NHS treatment as wholly unreasonable,
stopping at nothing in order to have a baby. By focusing on
procedural rights, it is possible to argue that what such
women want is to be considered in the same way as other people
seeking diagnosis and treatment by the NHS.
It is very important to argue for widening access to medically
assisted procreation within the NHS. This is because there
is a thriving private medical sector providing treatment for
infertility. Denying people access to NHS treatment in effect
pushed them into the private medical sector. Unlike other
conditions, the private medical sector dominates the treatment
of infertility, determining the direction of scientific developments.
I believe people are treated differently in the private medical
sector and the NHS. In the former, the profit motive prevails.
Indeed, in the context of the private medical sector, the
right to reproduce is a marketing slogan which can encourage
people to embark on a persist with treatment which many not
be in their best interests. Moreover protective mechanisms
such as the Patients Charter and the NHS complaints system
- however deficient and problematic they are - do not apply
in the private medical sector. Caveat emptor or an expensive
medical negligence suit is the only means of redress available
to unhappy patients who 'go private'.
The right to reproduce has encouraged an emphasis on patient
responsibility, and discouraged consideration of their need
for support and protection. The HFEA's guide to patients burdens
them with all the responsibility. They have to find a good
clinic, one that is appropriate for their condition. This
is a daunting task, which very few are equipped to meet. The
HFEA does not mention patients' rights to reasonable treatment,
or inform them of the different mechanisms of redress within
the NHS and private medical sector.
In conclusion, I want to encourage you not to talk about the
right to reproduce because it is meaningless. Instead, I suggest
we think about how to strengthen the procedural rights to
NHS treatment for involuntarily childless women and men.
Laurence Shaw
A new patient presenting with a fertility problem should first
be made aware of the fact that in general terms ten per cent
of couples do not conceive in the first year, and that there
may be nothing wrong with them. This does not alter the anxiety
they must feel when they cannot conceive when they want to,
because all around them they will see people for whom conception
occurs so easily. As a result counselling is an important
part of that first consultation. There needs to be education
about their physiology and how it works. They need to be aware
that the success rate in a normal cycle is only 16 per cent.
Contraceptive advice to pill takers suggesting, 'Miss one
pill and you will get pregnant' infers a higher conception
rate and raises expectations later in life. 16 per cent seems
a high risk of an unwanted pregnancy but to those trying for
a pregnancy it is the 84 per cent failure which is felt.
The first consultation is a long and arduous one, because
as well as the statistical aspects we have to talk about their
pre-conceived ideas of what they think might be the cause
of the problem, and indeed initiate the first investigation.
In my clinic the first investigation is gamete testing - the
sperms and the eggs. This initial assessment is little burden
to the male; although some males seem to find this an insurmountable
psychological burden. Biology confines us to less direct methods
of gamete assessment in the woman. Biochemical parameters
and ultrasound allow us to interpret whether or not ovulation
has occurred, and indeed how hard the body is working in order
to make that happen.
The next visit is a few weeks later. The couple are agonised
by the slowness of the follow-up, but this of course is dictated
by the menstrual cycle. The results are discussed including
the implications of negative as well as positive findings.
The female pelvic anatomy is the last of the basic investigations
and is undertaken by laparoscopy. At this stage the couple
are allocated one or more of the following diagnostic categories.
Tubal, ovulation, male factor problems or combinations of
these are tangible realities for the patient to address. Perhaps
the most agonising is "unexplained infertility". At this stage
we enter the treatment phase.
I am not going to talk about all the different treatments,
but essentially assisted conception, which we will concentrate
on tonight, is only one aspect of fertility treatment. The
difficulty with assisted conception is that it is a one cycle
shot, so we return to what nature produces, which is a 16-20
per cent chance of success. In a single cycle it is more likely
to fail than succeed.
I want now to look at how this service fits in with a Health
Service that was developed in the 1940s to treat the sick,
working man, and get him back to work. Admittedly a year later,
services were extended to his wife and children, because if
they are ill, he would need to stay at home to tend them.
This is the founding philosophy of the Health Service. This
limited service has evolved into what we now look upon as
comprehensive. It was not comprehensive when it was instigated,
and so it is not surprising that some treatments might still
not be fully funded. Fertility is a prime example of this;
particularly assisted conception which grew up in the private
sector. Personally, I have always been curious as to why,
when most primitive societies revere fertility, our civilisation
relegates it to a fringe health care product. Perhaps we can
discuss that this evening.
I would like to talk for a little about the 'Welfare of the
Child' clause. When I was a registrar, I worked for a "mature"
consultant who would not investigate or treat any patient
unless they brought a marriage certificate to their first
consultation. It was then when I questioned our role as doctors
to morally judge our patients. In fact it was an integral
part of my practice to try never to judge a patient morally,
whether it is a woman requesting termination or a woman having
their ninth child and getting pressure from midwives or other
professionals to be sterilised. She may want a tenth and ,
provided risks and benefits are presented in a balanced way,
should she not be involved in the decision making other than
as a recipient of a decree?
It was therefore with some dismay that I saw the inclusion
of this clause in the 1990 Act. Many IVF units have a system
using questionnaires given to patients. These include questions
which, if ticked, are likely to lead to them not getting treatment.
So it is unlikely they will tick those things. That is one
way of judging. The other is to get the clinician to do it.
This is not an easy thing to do as a professional, to judge
people's ability to be a parent. The case has been mentioned
this evening of someone denied treatment because of what she
had done 15 years earlier resulting in her having a child
taken into care. She may actually have been better off if
she had been convicted of a crime, served a prison sentence
and started afresh. I suspect there would have been less case
against her than her having had child taken into care.
Then there is the issue of the difference between assisted
conception and natural pregnancy. With natural pregnancy we
do not have baby licenses, and nor should we. So why have
an artificial way of preventing people having assisted conception?
The answers to that can be discussed. However, If we do, should
they not be imposed at the point at which we start to investigate
the patient. Why should a woman go through all that investigation
(and the man) with all the anxiety involved, only to be told
they are eligible for one form of treatment but not another.
If we are going to restrict access, should it not be done
at the start.
Then there is the problem of adoption. The adoption criteria
are very strict, because of the shortage of children for adoption.
The problem in the clinical situation is when couples seek
infertility treatment because they have been turned down for
adoption. So here there is another double standard. Natural
conception, investigation of infertility, assisted conception
and adoption all seem to have different standards.
In response to Naomi, the "right to reproduce" came about
as a phrase in the post-war era through the World Health Organisation,
as a response to the Nazi mass sterilisations in the concentration
camps. The principal was adopted because of this, and has
often been quoted out of context. It was a defence against
eugenically driven state sterilisation in future . It is clear
that an infertile couple have rights but the "right to reproduce"
for all couples requires some qualification in terms of other
parameters.
The East Kent local health authority criteria for assisted
conception are that the woman should be under the age of 36
at the time of decision that this treatment is the desired
option; neither partner should have a living child; and the
referrer should satisfy themselves that the couple have a
stable relationship. The authority will fund one cycle. This
returns me to my point, about the 16 per cent success rate.
At the pre-treatment assisted conception consultation, I make
it clear to the patient that although I understand it is difficult,
she and her partner should look on it as a course of treatment,
rather than a single shot. By doing that they may not throw
all their hopes into one cycle.
Finally I want to defend my profession against the earlier
comment. The point has been raised that private care is different
from the NHS. The idea that the advice one gives to patients,
whether in IVF or any other practice, differs because of a
desire in private practice to make profit must be refuted.
The idea that we are purveyors of operations, rather than
purveyors of good health is inappropriate. |
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