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  Ethics and infertility treatment: should we have the 'right to reproduce'
By Juliet Tizzard, Naomi Pfeffer and Laurence Shaw


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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