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Ethics in an assisted conception unit
Mr John Parsons
I'm going to work my way though the treatment of patients in an assisted conception unit. I should say that this is the way that we have developed at King's College Hospital. There are other ways of managing these problems but I'm going to talk about the sort of problems that are dealt with on an everyday basis in a fertility unit.
When it comes to patient selection - because that's where we begin, with our infertility patients - we have the law to act as a guideline for us. The Human Fertilisation and Embryology Act states:
'A woman shall not be provided with treatment services unless account has been taken of the welfare of any child who may be born as a result of the treatment.'
We should take into consideration the needs of the child for a father and also other children who are in the family. The Human Fertilisation and Embryology Act presents us with ethical problems immediately because the Human Fertilisation and Embryology Authority (HFEA), who sees that this act is followed, doesn't actually give any firm guidelines on how it should be interpreted. We are just supposed to take account of the welfare of any child - there are no limits to how we should take it into account. Over the last five years since the Act went through parliament we've had to develop our own response to this aspect of the act and develop an ethical framework to work within. But it has certainly presented us with many difficulties.
How is the welfare of any child who might be born as a result of treatment assessed? Information can be gained from the couple. However, if you are anxious about the welfare of the child, it may not be the couple who are going to give you the information needed. Often it is not. It must be remembered that if you did not have a fertility problem you would not have to face this imposition in relation to your suitability as a parent. So when we come to making our enquiries we have to be sensitive to that aspect. We have to be obeying the law and we have to be reasonable in what we do.
Of course the referring doctor may give you useful information about the background of the couple. But the referring doctor may not understand the legal obligations and may not actually want to be responsible for making decisions about whether we should allow this couple to have children or not. The GP could of course be the referring doctor but one would expect the GP to have the most useful information about the couple sitting in front of you. But again the GP may not be aware of the law and may not aware of our responsibilities and then his responsibilities.
Who makes the decisions?
Where does the buck stop - so to speak - when it comes to making decisions? The doctor at the consultation may decide that this couple doesn't need any more assessment. If there is a doubt then we take the problem to our weekly meeting. At our weekly meeting we have doctors, scientists, nursing staff, management staff, and counsellors so that we can come to a multi-disciplinary decision. So a more difficult decision does not lie with the doctor alone. It is a decision which will be made with as many people involved as is thought necessary. If that team can't make a decision - and often the advice of other professionals may be sought - we may ask a couple to see a counsellor, a social worker, a psychologist or maybe a psychiatrist - whoever might be appropriate when it comes to making a decision about how this particular couple should be treated - to assess the risk to the child. If we still can't make a decision then we take the case to the hospital ethics committee. I am, and I'm sure other consultants in charge of assisted conception units are, a regular attendee at the hospital ethics committee. We take along these patients and we face these good men and true who then discuss the problem in hand and come to a decision.
What is the role of the hospital ethics committee? The hospital ethics committee will of course review all the research protocols - that is standard work for hospital ethics committees. Our committee lays down rules about certain categories of patients which need particular ethical approval such as patients who are undergoing IVF surrogacy. All IVF surrogacy arrangements in our hospital go before the hospital ethics committee. They go before the committee with as much backing as is required, as much documentation as is required. We require a social report on the surrogate, a psychological report on the surrogate and on the recipient couple. We also like to ensure that the couple has been advised legally.
We like the ethics committee to assess all known donors, both egg and sperm donors, because this is particularly difficult area, we feel, where there is the possibility of coercion or subtle pressure if the donor is known. We would want to make sure that the donor has made this decision by their own free will and the ethics committee likes to be involved in this. It resolves welfare of the child dilemmas. We have welfare of the child dilemmas every week in our team meeting that we have to face. This causes a lot of discussion which can become extremely heated. At times, we have to actually stop the discussion and delay it, for everybody to think about it, go away and come back later to discuss the situation further.
I have a number of cases here that I want to run through to give you an idea of the problems we have to face.
1. A forensic psychiatrist at another hospital was told by a patient who he was seeing as part of a probation order that he was being treated at King's College Hospital. Because this person had been convicted of a sex offence - exposing himself in front young women - the forensic psychiatrist informed the HFEA. He felt that we should have picked up this particular sex offence. Of course it is arguable whether or not the offence was a risk to the child, but the man said that nowhere during our questioning of him and his wife did we leave it possible for him to admit to it.
The forensic psychiatrist would not identify the man in question because he had been advised by his defence unit that, because there was no living child at risk, a breach of confidentiality would not be justified. So we found ourselves with a patient on our programme whom the HFEA felt that we should have identified but who we could not identify. We could not get the forensic psychiatrist to tell us who the patient was. This put us in an extremely difficult position. We had to face the possibility of perhaps checking our waiting list against a list of convictions for sex offences. But this involved giving our database to the police to compare with theirs and it was a frightening prospect: heaven knows what you might have turned up. I'm sure the patients would have insisted that the staff had it done to them as well. So this really wasn't acceptable.
We still don't know the identify of the man but what we did do was to introduce a system whereby patients had to declare a whole list of what we thought were relevant bits of background information: whether they had any previous convictions, whether they had psychiatric history, whether they had taken drugs in the past - this sort of questions. Also we asked that their general practitioner complete a form which says that as far as he is concerned there was no background history that was relevant to the welfare of the child or relevant to whether or not we should treat the patient. So now we have introduced a really quite draconian questioning system for these people, all of whom if they did not have a fertility problem would be having intercourse and getting pregnant like anybody else and not being questioned in this way. This presents us with a lot of difficulties of how much we should take into consideration information on the client.
2. We don't usually test for HIV status. We certainly don't routinely test people before they get pregnant normally. So we don't see that we should be testing our infertility patients. But of course it is relevant in relation to the welfare of the child. And of course there is argument that the staff dealing with sperm and blood might want to know if the samples are infected with HIV or not.
A Ugandan couple were referred by their general practitioner for in vitro fertilisation and their GP drew to our attention their origins and the perceived risk of HIV infection. HIV is very common in Uganda as I'm sure you all know. The risk of an HIV positive mother passing the infection to her child is not that high - it depends how you look at it. Ten to fifteen percent is high enough if you are the child. If the couple are both infected the child could be an orphan in five to ten years. We do not wish to treat a couple until we know that at least one of them is HIV negative. The woman refused to be tested. Is this reasonable? Are we discriminating against this couple just because they are Ugandan? Is it reasonable to discriminate against someone just because they are Ugandan? It is an ethical situation which generates a lot of heat.
3. A couple asked us to treat the healthy female partner of a man who a year previously had received chemotherapy for lung cancer with bone secondaries. Before he had the chemotherapy he gave a semen sample. Patients who are as sick as this normally have very poor sperm so in the past this has not been a major problem. But with the advent of intracytoplasmic sperm injection we are now able to get people pregnant with the very poorest of sperm. So now patients who give semen samples before this sort of therapy stand much better chance of success.
The woman was perfectly understanding of the situation. They, it must be admitted, were not totally facing the fact that he was inevitably going to die. But I felt this was part of their defence mechanism rather than the fact that were absolutely denying it. I felt myself that it was reasonable to treat this couple but I took the problem to the meeting. It was decided that it was reasonable to treat this woman whilst her partner remained well enough to support her and she understands that when he dies we would not offer posthumous treatment for at least one year. We have a house rule that if there is a change of partner or if dramatic circumstances occur, that a delay of a year is required so that the couple have time to think about what they are doing. It takes at least a year to recover from the death of a partner, if not longer. So this was a decision that we could make in house without have to go to the hospital ethics committee. But of course you might think that we should not have taken it to the ethics committee at all.
4. This couple had been together for ten years. The woman had had a previous husband whom she had married when she was 17 years old. She'd had three children and an abortion in rapid succession by the time she was 21. The three children had been taken from her and adopted because of neglect. There was no physical abuse - there was some suggestion of sexual abuse by the grandparents - no suggestion that she did anything else but fail to cope. I think that there must be an awful lot of people who have three children before the age of 21 who have a lot of difficulty coping. I can certainly empathise with that.
Now, at the age of 30 she wanted to have children with her second partner. I personally felt that it was reasonable to give her a second chance. We took advice from the social work department of the council that had had the child adopted. They weren't very enthusiastic about us treating this couple but they wouldn't say no. They did tell us that they wouldn't take the child straight into care, but that they would keep the situation under review. We took the history of the woman to the hospital ethics committee and the request for treatment was refused. I felt that it was refused for the wrong reasons. The ethics committee felt that it could not take on such a huge responsibility in the light of this history. I personally felt that ten years later, there was a different scenario and that their decision was unreasonable. They certainly don't agree with everything that we put before them.
Our ethics committee doesn't ask us to take single women along to them for decision making. Clearly, when we are treating single women, it boils down to making sure they have a realistic understanding of what it is like bringing up a child. Other than the counselling to confirm that they do have realistic expectations, we don't ask any more of them. With lesbian couples it is the same sort of situation. We ask for counselling. We like to confirm that the two women involved understand what they are getting in to. We also, because of our obligation under the act, like to know that there will be men in these children's lives. They don't have to have a father, but they should at least have male influence in their lives. We haven't treated any women over the age of 50 yet, but I'm quite sure that sooner or later we will. I personally believe that it is reasonable in certain circumstances to do that.
With egg and sperm donation we clearly need to ensure that the couple who are having egg or sperm donation do this understanding the implications of what they are getting into. All our patients who are having egg or sperm donation go through counselling before they are treated with these gametes. I was recently involved in a case of great media interest of trans-racial donation. I personally feel that before you use gametes from a different race, you need to consider it carefully rather than do it in an emergency situation. The situation I was involved with at King's was a situation where there was no sperm of the right race available for this particular woman and she said, 'Well, I'll have another race.' I felt that it needed more than just a moment's thinking before making a decision which I think is significant.
That is the role of ethics in an assisted conception unit. Have we ever gone against the decision of the ethics committee? No, we've never gone against a decision. I suppose in a way we look upon it as the final decision making in difficult situations. My approach when they disagree is to go back again after six months with a bit more information and try to get them used to the idea.
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