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THE MEDICO-LEGAL SOCIETY A meeting of the Society was held at the Royal Society of Medicine, 1 Wimpole Street, London WI, on Thursday, 9th January, 1992. The President, Her Honour Judge Suzanne Norwood, was in the Chair.

ETHICAL DILEMMAS IN FETAL MEDICINE by PROFESSOR C.H. RODECK, DSc, FRCOG (Head of Department of Obstetrics and Gynaecology, University College and Middlesex School of Medicine) The President: Good evening, ladies and gentlemen. It gives me the greatest pleasure to introduce to you Professor Charles Rodeck. Mr Jeremy Wright has been good enough to tell me a great deal about Professor Rodeck. He says that Gower Street, which separates University College from the Medical School, has been said to separate medicine the science from medicine the art, and he describes obstetrics as being in the latter category. The science of monitoring the development of unborn babies in ways unimagined even 25 years ago, has given rise to new ethical and legal dilemmas, and that, I understand, Professor Rodeck, is what you are going to talk to us about. (Applause). Professor Rodeck: Thank you, madam Chairman, for those kind words. I was asked to talk on ethical dilemmas in fetal medicine. I am going to look at some situations where there are difficulties in deciding what is ethical and what isn't, or what may be more or less ethical, although I don't wish to imply by that that one can quantify or weigh or measure ethics in any particular way, but perhaps only by comparison. I don't think we should forget that there are situations, which are not uncommon, where there may be no particular ethical difficulties but where the standard of practice may not quite measure up to what it should be and, in those circumstances, the practice might be regarded as less ethical than it should be. The Health Service at the moment is obsessed with audit, mainly economical and financial, and I would like to venture to suggest that we shouldn't forget about ethical audit. That serves me as a reminder that there is a parallel between good medical practice and good ethics, and perhaps vice versa. Now, before I go any further, I perhaps should tell you a little bit about fetal medicine and what it is. It has recently been recognised by the Royal College of Obstetricians and Gynaecologists as a sub-speciality, with training programmes, accreditation and so forth. Just very broadly speaking, fetal medicine includes the promotion of maternal and fetal child health and, conversely, the prevention of maternal and fetal ill-health. It involves handling maternal complications, which includes diagnosis, maybe through genetic screening, fetal assessment in later pregnancy, the management of the delivery and perinatal management. All these may have to be considered even before the woman conceives, there is a lot of emphasis now

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on preconception counselling, and indeed also in the period immediately or soon after the delivery. Now there have been rapid developments in the last few years and there are now fetal medicine specialists who interact with a lot of other specialists both in laboratories and in other clinical disciplines. No wonder this is an ethical minefield. The area where progress has occurred particularly rapid in the last ten years has been in the field of screening. Now we have screening for neural tube defects and Down's Syndrome and we will probably quite soon have screening for cystic fibrosis. Prenatal diagnosis is the next stage after a screening programme. There have been changes in the methods and in attitudes to termination of pregnancy. There are areas now where the fetus can be treated in the uterus, which raises the problem of how to manage a pregnancy with fetal abnormality: these are things that I will come to later on. Now we must bear in mind that there are three underlying basic guidelines or tenets which underpin virtually everything in medicine, and particularly in this field; that patients have a right to information, to confidentiality and to autonomy. In the area of.screening we have to look very critically at the various guidelines that should be considered before a screening programme is introduced. Some of these are sensible, some less so - for example a test should be acceptable to the population: one might not really be aware of that until one has actually got the screening programme in place. One should know something about the natural history, because one needs to know what the outcome of the particular problem would be. There should be an agreement about who should be treated. There are various economic and epidemiological factors; it is clear that one shouldn't be wasting money or effort on something that isn't important. Various other things should be quite clearly recognised: what the treatment is, that the tests are fully evaluated, and so forth. Now there are, in this area particularly, problems with what to do with genetic information; these can be classified under the gathering, the recording and the use of genetic information. There are obviously many problems in collecting large-scale information from screening programmes. Also due consideration has to be given when investigating families. An example would be for predictive testing, which can now be undertaken where there is a history of Huntington's Chorea, a disease which presents at the age of about 40, and which can now be detected in utero. What should we tell patients who might be at risk of this? How can we decide who really wants to have that information and who doesn't? There may also be obstacles to investigations, usually in the family, by a refusal to provide blood samples for tests, and so forth. The recording of genetic information is usually in genetic registers. Here there are problems of confidentiality and most genetic centres now have registers which contain information about family members, who don't even know that it is there. Which raises the problem of the use of genetic information and

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whether it is disclosed in certain circumstances or not. Insurance companies are now increasingly interested in genetic information. It may be inadvertently leaked by telling one family member about it. The clinical use of this information leads to difficulties sometimes, and here it relates to very serious problems, such as whether to have a child or have an examination, whether family member X is going to develop a disease. Now it is in precisely this sort of area that the so-called 'golden rules' of confidentiality and autonomy sometimes have to be broken, and this particular debate relates to information which concerns having children and the possibility of their developing a disease. There are situations where the withholding of information in order to maintain confidentiality for one person may cause harm to another. For example, if somebody is trying to decide whether to have a child or not, and in these circumstances it is a right to be able to avail themselves of the necessary information. Indeed one could say it is their duty to find out whether there are any particular genetic problems before then going on to concerve.

Now another problem with screening programmes is that there is a widespread view amongst the medical profession that these tests are actually less important than diagnostic tests, probably because it is less often that you actually find a positive result, and of course one of the effects is that negative results (good news) are often not relayed to the patients or clients. In many areas that has now been set right, particularly in the cervical cytology screening programme. But I must say in antenatal screening we do fall short of fully informing our patients of negative results for example in serum AFP (0: feto protein) screening for neural tube defects. So in this area both the public and professionals need further education; there should be better information in leaflets and more resources spent on counselling. That leads to other problems about who should do the counselling, how it should be done, how directive or non-directive it should be. There are no easy answers which cover all eventualities. There is also a good deal of misunderstanding and anxiety engendered by screening programmes (which is a major difficulty of screening programmes) and the explanation of the level of risk of a patient having either a false positive or false negative result. On the other hand, on the more positive side, there have been great benefits from effective screening programmes, one of which was the introduction of serum AFP screening in pregnant women to detect neural tube defects (such as spina bifida) that was introduced into the United Kingdom. Since the introduction of the screening programme we have seen a very dramatic fall in the incidence of neural tube defects. This means that there are now fewer babies with the severe handicap of spina bifida being born. I want now to move from screening tests on to prenatal diagnosis. This has been somewhat unfairly sometimes called a 'search and destroy mission' but it has far wider aims. One of the most important is the attempt to remove the fear of fetal abnormality, which is present in virtually every pregnancy, and any ability to do that is beneficial. There is, of course, the prevention of handicap

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and the encouragement to families with a genetic history to have healthy children which they might otherwise not have done. There are however some women who wish to keep the fetus even if it is found to have an abnormality, and an early knowledge of the presence of an abnormality may be extremely useful for them as a preparation, so that although it is a shock at an earlier stage of the pregnancy by the time the birth comes around they are well prepared and some appropriate medical measures may be taken if necessary. It can also allow for the more rational management of a pregnancy when you know that a problem is present and usually the fetus can if necessary, be treated in utero. Undertaking tests like these requires a lot of information. Patients should be told of the advantages and disadvantages and the various options. There is also a debate about how much they should be told and the level of risk that should be divulged. This too is something that can create a lot of anxiety. Termination of pregnancy is one possible outcome and must be discussed, but it should not be made a condition of having a test (as it sometimes has been) and neither should women be pressurised into having a termination if the fetus is found to be affected. The delivery and birth of an affected child after prenatal testing is not a failure at all; indeed it is a triumph, because here is a child that is, after all, wanted despite its abnormality. There are other.problems with regards to relaying information to the patient. If it is bad news, how best is that to be done? How to counsel people if the results are indeterminate. There may be mosaicism; where two different cell lines are present. There may be some relatively minor abnormalities, usually related to an extra sex chromosome. Whether to tell the woman the fetus's sex, particularly if it is female. There are some laboratories that don't wish to divulge the sex for fear that the woman will terminate a female fetus. That is a problem that we fortunately come across very rarely and is something that is culturally associated. There are many techniques available for prenatal diagnosis. They can be divided into the non-invasive, based on ultrasound, and the invasive ones, which involve putting some instrument into the uterus and obtaining a sample for analysis. Generally speaking these are safe, the main risk with non invasive sonography is misinterpreting the picture, the main risk of invasive techniques is causing miscarriage due to the intervention. The most recent technique (that was introduced in the mid-80s) is chorionic villous biopsy which involves taking a sample from the placenta. I will just dwell on this method a little. It has a number of advantages. Primarily it allows early diagnosis, often in the first trimester, before 12 weeks gestation. The sample that one obtains from the villi is an excellent source for DNA, which has permitted the application of molecular biological techniques to the sample and this has enormously expanded the possibility for diagnosis. Although the tissue is not directly from the fetus it does represent the fetus in most instances and, furthermore, it can be obtained without entering the amniotic cavity. So these are some of the very considerable advantages. This procedure is also somewhat unusual in that it has been better investigated and evaluated than most other techniques in some very large-scale stu-

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dies. These studies have had the support of patient support groups, the Maternity Alliance, the Down's Syndrome Society and so forth, which is quite an unusual situation. One of the main risks of chorionic villous sampling (CVS) that was feared was that of miscarriage, but it has been determined that the risk of CVS is a little higher than the risk of performing an amnioncentesis although in two studies this didn't in fact reach statistical significance. I think most of us will accept that there is a slightly higher risk and that is one of the slight drawbacks of having this test. In the early days there was considerable fear that there might be fetal abnormalities but these didn't materialise for a long time and it was only very recently that a report from Oxford indicated that there might be a risk of babies with limb defects. This highlights one of the problems of introducing new technology, even one that has been very well evaluated. We are now faced with a need to gather more information, and this is being done at the moment, to see whether this is in fact a causal relationship. Causality has not yet been firmly established; but, even so, I think it is not advisable now to perform this procedure before 10 weeks of pregnancy, since the association between CVS and lower limb problems occurred in women who had had CVS at about 8 weeks. So having dealt a little bit with screening and prenatal diagnosis, I want to now move on to the management of fetal abnormality. Here again there are three aspects that are of particular importance and relevance, all of which have been changing in recent years. The three aspects are; the relationship between the mother and the fetus, the legal and ethical status of the fetus as a patient and the number of options that the mother may have to choose from. In particular the introduction of choice is a recent phenomenon. It hardly entered into reproduction and pregnancy through history. Getting pregnant used to be a fact of life and indeed a duty, often a continuous one, and it was a reflection of the status of women at that time. To be pregnant was something that was endured in most instances; those who didn't wish to be pregnant went to visit the clandestine abortionist. Most cultures and religions have had some kind of taboo against abortion and they have given the fetus some rights in the form of protection against abortion. The Christian religion for centuries followed the teaching of Aquinas (and that was in turn based on Aristotle) that the fetus first became a human being when rational ensoulment or animation occurred, after 40 days for a boy and 90 days for a girl. Why there should have been this difference is not clear to me. Now the killing of a fetus before that time was immoral, but it was not homicide until after that time. It was only in the 19th century that the church took the view that life began at fertilisation. Throughout all that time knowledge of the fetus was very rudimentary and it was only recently, with the prenatal tests that I have mentioned, that we have now been able to get the information. Before that we had the mother's history, symptoms of amenorrhoea and quickening and one could listen to the fetal heart with a stethoscope basically one would do a horoscope for the purpose of providing information.

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Now these women, the daughters of Eve, scarcely had any rights until the 20th century. The emancipation of women and the rise of feminism gave primacy to the woman's choice, leading to less restrictive abortion legislation in many countries. It has now become legal and ethical to terminate pregnancies, often under conditions that are very loosely defined. In recent decades the power of women to exercise choice with respect to reproduction has increased further and more than ever before women now use contraception and decide when to become pregnant and how many pregnancies to have. The expectation of a normal, healthy baby is also a recent phenomenon, and expectation that has sometimes recently become a quest for perfection which, needless to say, is illusory. These same factors have led also to a counterbalancing and strengthening of the status of the fetus, since the fetus is usually the focus and objective. In the last 20 years all the information that can be obtained from the fetus, and the genetic diagnoses that can be made, have cast the role of the fetus as a patient. The claims of the fetus increase as gestation advances and as the viability age falls, and this age is now regarded as 24 weeks. The interests of these two patients, one inside the other, can obviously conflict. This is a unique situation in medicine. With fetal diagnosis generating these new situations there is no other field in medicine where the need for accuracy is as high because the consequences of the test may lead to the decision to perform an abortion. The diagnosis must therefore be as accurate as possible as should the prognosis. The two are obviously related: they are based on knowledge of the pathophysiology and one needs to perform an exhaustive search for other abnormalities and to find out whether the chromosomes are normal or not. If a problem has been found a number of different courses of action are possible and these will vary from appropriate counselling, to doing nothing during the pregnancy to postnatal treatment. It may lead to other forms of action for example premature delivery to provide the fetus with additional and earlier treatment or it may lead to utero treatment with a progressive lesion, and it may, of course, also lead to termination of pregnancy. The decisions as to which course of action to follow depend on many factors such as the diagnosis, the gestational age at which the diagnosis is made and on a balance between the best interests of mother and fetus, as viewed by both the doctor and the mother. Beecham and McCullogh suggested that the two ethical principles of beneficence and respect for autonomy underlie the moral obigation that protect and promote patients' best interests. Beneficence means a doctor assessing the various therapeutic options objectively and recommending those that provide the best balance between benefit and harm. This principle is in the context of a medical perspective and counterbalances, and sometimes in conflict with the principle of respect for autonomy. It is based on the understanding that the maternal patient has values and beliefs and the acceptance that she should have the right to choose alternatives based on her values and beliefs. The proper exercise of this right depends on a full disclosure of information

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about the management options, the risks and possibilities, and in particular the prognosis. The questions that one is always asked are: What are the chances? What is the baby's future? These answers need to be given in an objective manner and a doctor is, of course, not justified in withholding information with which he or she disapproves. Churbinak has shown how this way of thinking can be applied to analyse the complex decision-making when a mother has an affected fetus in utero. Maternal best interests are protected and prompted by both her autonomy-based and the beneficence-based obligations of the obstetrician. It is assumed that the fetus has no autonomy-based obligations because of the nature of its immature central nervous system and therefore the fetal best interests depend on the beneficence-based obligations of both mother and the physician and their balance. When a fetus has been diagnosed as having lethal condition, such as anencephaly or renal agenesis, and death is a certainty and cannot be avoided there are no benificence based obligations on the doctor or the mother to undertake therapeutic intervention and none are violated by recommending termination of pregnancy. Indeed, attempts in those circumstances at some sort of therapeutic management would contradict the benificence based obligations to the mother, as well as the fetus - 'Thou shalt not strive excessively to keep alive'. As mentioned before the certainty of diagnosis and of prognosis is of paramount importance, and in a situation like anencephaly there is hardly ever any doubt about that. But where it is not quite so secure - for example skeletal dysplasias or cardiac defects - there may be some benificence based obligations to the fetus, but those to the mother and to the family, as well as the autonomy based obligations to the mother, could be stronger and they might well favour termination of pregnancy. Termination is the most likely management before the age of viability, and now, of course, it is possible after 24 weeks, with the enactment of the Human Fertilisation and Embryology Bill. This Act now permits termination in the third trimester for 'serious conditions', although there are no proper guidelines, or no guidelines at all really, as to what 'serious' is and how the word should be interpreted. Previously the difficulties all related to the gestational age at which termination could or might be performed. Now that emphasis has focused on to the type of condition. Should we terminate a Down's syndrome fetus at 32 weeks? Most doctors and patients would feel extremely uneasy about that. And, if it was decided to do so, how should it be done? There are no clear guidelines about that either. Certainly in those circumstances the parents might well prefer to do nothing at all and let nature take its course. Then there are a number of conditions and disorders that are in fact amenable to intrauterine therapy. Good examples of this are the presence of antibodies that break down the fetal red cells and cause anaemia, or that break down platelets and cause a bleeding disorder, and these can be treated, with a great deal of success, by intrauterine transfusions. Then there are other fetuses that might have obstructive uropathies, an ob-

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struction to the outflow of urine, leading to a distention and back pressure in the fetal urinary tract. In these situations a plastic catheter or shunt can be introduced to bypass the obstruction which in certain cases may be useful. A concomitant of this type of blockage is an absence of the amniotic fluid that one would normally expect to find, and that in itself can also have harmful and damaging effects. Now in pregnancies like this there are strong beneficence based obligations to the fetus on the mother to provide intrauterine treatment. A very different example is hydrocephalus. Hydrocephalus is a distention of the cerebral ventricles due to an obstruction or blockage inside the brain, leading to a build-up of fluid. In the early 1980s attempts were made to introduce drainage shunts into the fetal brain in utero. Fortunately, not very many of these procedures were performed. It was very risky and the result were bad with a high mortality rate due to considerable technical problems. So although this created a lot of interest eight or nine years ago direct intrauterine treatment for this problem is now not employed. But one would use an inspective management, one would perform follow-up ultrasound scans to see whether the situation was changing, and if towards the end of pregnancy one found that this distention was increasing progressively then one would consider delivering early so that the baby could have postnatal treatment earlier. This is a difficult situation to manage accurately because the prognosis is always very uncertain. Even once the baby is born and has been fully assessed paediatricians are usually extremely cagey about giving a prognosis, and, of course, this is even more difficult while the baby is still in utero. One has to do the best one can. If no intervention is likely to lead to severe cerebral palsy and intervening has a good chance of success, then, despite some risk of fetal loss due to the procedure, the balance of interests is in favour of intervening. On the other hand, if the intervention is likely to result in an infant with cerebral palsy but no intervention is likely to lead to death, then the balance of best interest is more in favour of not subjecting the mother to intervention. So the burden is on detecting where these interests lie and what the prognosis is. Now the most extreme example of intrauterine treatment is to perform a laparotomy to open the mother's abdomen and open the uterus with a hysterotomy incision. This practice is at present restricted to only one centre in the world, which is Harrison's Unit in San Francisco, and one of the main indications for performing this is congenital diaphragmatic hernia where there is a defect in the diaphragm, which separates the chest from the abdominal cavity, so that the contents of the abdominal cavity will herniate up into the chest. This herniation leads to pressure on the lungs and pulmonary hypoplasia, which means that when that baby is born the lungs will not function and it is very likely to die. The mortality rate of diaphragmatic hernia is very hgh, in the region of 80 per cent. So from the fetal beneficence point of view, the obligation to do something is really very strong. On the other hand, the risk of this intervention to the mother is really very considerable. She has to have a major operation and the success of operating is low. In a recent report, out of eight attempts only two babies survived. She will then need another operation, a Caesarean section to deliver the

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baby and of course her uterus has been scarred twice, which means that each subsequent pregnancy is riskier too. So procedures like this are performed very rarely and can only be performed after very careful deliberation and obviously only if the mother very strongly wants it. Even then it is very questionable, I think, whether it should be performed at all. I think, on an experimental basis, one does have to have perhaps one centre at least, to see what the experience is before others follow. Now when a fetus has an untreatable condition the duty of care is not absolute and it is not ethical to strive excessively in hopeless cases. If it is treatable, the mother does have a moral obligation to allow treatment, although she may not always wish it. Her benificence based obligations to the fetus are then in conflict with her own autonomy. In that situation a clinician can employ persuasion, diplomacy, discussion, but should not resort to the law. There have been several instances in the USA of court orders being issued. In 1987 a dying woman was forced to have a Caesarean section in order to try to save the life of a 26-week fetus and in that case the judge gave no weight to her wishes because of her impending death. The outcome was that both died and there was a lot of outrage and uproar and more litigation. The appeal court decided that a woman cannot be forced to have a Caesarean to save a fetus, even if it was viable. On a balance of maternal to fetal rights, it seems correct that a moral duty should not be converted into a legal obligation. We should try to avoid regarding a mother simply as a fetal container. She should be, if not necessarily the only arbiter, the final arbiter where the fetus inside her is a patient. Now finally, a few words about research and some future directions. Fetal material has been obtained for research for a long time. It can be obtained either by sampling procedures while the fetus is still in utero or more often after termination of pregnancy, after the fetus is dead. Recently the Polkinhorn Report has provided some guidelines. One is that there should be a separation between the clinician involved in the decision to terminate the pregnancy and the researcher, and the other is to ensure maternal consent. Although, strangely, whilst in every other area we now try to ensure that consent is at least reasonably informed, in this particular instance the report specifically states that the mother should not be told about the research. Now these particular conditions may in fact make research on fetal tissue more difficult, which would be very unfortunate. It is important not to inhibit research on fetal tissue at this very moment in particular because the application of the new molecular biological techniques to developmental biology are really promising and have resulted in major discoveries. In addition, the application of molecular biology to early embryos will lead, and have already started to lead, to pre-implantation diagnosis, which will allow women to conceive only embryos that have been diagnosed as not having a disease and thus enable them to avoid having to terminate a pregnancy. Fetal tissues have also been obtained for postnatal transplantation and are used for diseases in children and adults. It has been quite widely used on an experimental basis for problems like diabetes, and more recently, of course, for Parkinsonism. A couple of years ago there was a great deal of interest in the

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media, and it was this that led to the setting up of the Polkinhorn Committee whose main concern was that women should be protected from being pres«rrised to have a termination and also to try and prevent women from getting pregnant purposefully in order to provide fetal material for a relation. This, of course, is an extremely difficult area to make judgments on. None of these particular forms of treatment has yet come into any clinical practice. Another use of fetal tissues could be for transplantation in the fetus itself, and here there is very great interest in giving stem cells, which will make normal blood, to fetuses that have a blood disease. The commonest genetic disease in the world are conditions like sickle-cell disease, and if it was possible to replace their deficient red blood cells with healthy red blood cells, then prenatal diagnosis would lead to treatment of these conditions rather than termination of those pregnancies, and that would be a major advance. We know that it is highly unlikely that stem cells from adults will work when they are given to fetuses, but there is evidence that if fetal stem cells are taken from fetal villi samples, then this may produce a graft that takes and therefore might be successful, but a great deal of research is required before we know whether this will work or not. Finally, an area of extraordinary promise is that of gene therapy, which would involve replacing a defective gene by a healthy one, and this, in simple terms, is rather like a transplant. There are in fact a number of programmes now where gene therapy is being carried out for a number of genetic diseases in the United States. All the gene therapy that is being carried out is called somatic gene therapy, which means that this is on cells taken out of an individual suffering from the disease; they're treated and then put back in. This looks as if it has to be done repeatedly and currently the success rate is not very high, which is probably related to the difficulty in getting the genes into the right place in the DNA. There is the alternative possibility of treating embryos with genes, but that, of course, means that the gene line would be treated as well, and although that may sound superficially very attractive, it means that an intervention is being performed which will affect future generations and so the wide-spread ethical opinion is against performing any embryonic or genetic gene therapy: it is entirely restricted at the moment to somatic gene therapy. Now, in conclusion, ladies and gentlemen, we live with ethical problems every day. Most of them, fortunately, are not that difficult, but the difficult ones, I think, are unquestionably going to increase. The greater capacity that we have to do good is going to be shadowed by a greater capacity to do harm. That may sound unduly pessimistic but I do think that more than ever, as Richard Callow put it, ethics and science need to shake hands. Thank you very much. (Applause). DISCUSSION The President: Professor Rodeck has said that he will be very happy to answer any questions that any members have.

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Sir Henry Brooke: Is there any consensus emerging among doctors yet about what is and what is not serious handicap under the new Act, which permits termination after 24 weeks, or is it at the moment simply being left to the judgment of the individual practitioner? Professor Rodeck: It's being left to the judgment of the individual practitioner. People would very much like to have some sort of consensus or guidance: I think everybody is hoping very much to avoid the problem. Of course, it does lay much of its emphasis on trying to get an early diagnosis, and by and large that does happen. Mrs Brahams: I wonder if I could add something to the last speaker? The last speaker was the Judge in the case which I think led to the change in the law. I think I am right, Sir Henry. Sir Henry Brooke: A few things happened. Mrs Brahams: Well, Sir Henry was the judge in the case where there was a spina bifida baby and the mother claimed she should have been allowed to have an abortion at about twenty-five and a half weeks. The question was whether there was negligence and whether, had this been discovered at the time, she would have been able to have an abortion. Various eminent specialists appeared and said they would have performed an abortion at that time, but the Judge in that case said that if they had done so they would probably have been wrong, because the baby would have been capable of being born alive. This all caused a considerable amount of anxiety, and in fact when I wrote about the case I said that perhaps it should be considered that the Act should be amended. I don't know if any of you read it, but it was. Professor Rodeck: Yes, it solved one difficulty and created a lot of others. Dr Peter Green: If I may quote you, Professor, you said' ... there is no other field in medicine where the need for accuracy is as high'. There is a sword of Damocles, I take it, that hangs over the diagnosticians: if they get it wrong negatively, then you may abort, at the worst extreme, a healthy fetus; if they get it wrong positively, then it may lead to the birth of a severely handicapped fetus. What is your general comment about what should or could be done to improve or regulate practitioners? Professor Rodeck: Well one has to have very high quality control. One has to have good training and one would like to have good equipment. Both those are becoming increasingly widespread, but one would like to see them improved further round the country. One needs to have confidence that the laboratory is going to give one a reliable result. The laboratory, of course, would like to have an appropriate sample. Clearly sometimes inappropriate samples are sent to laboratories. There are a series of steps in a the chain. One needs to have a great deal of care, because one is restricted in the number of times that one can repeat some tests. With ultrasound you can repeat it without causing risk, but time is passing all the time. So one is faced with these two problems in pregnancy, that time is passing, one wants to get the situation sorted out as early and as quickly as possible, for maternal and other reasons, and at the same time one is limited in the ability to repeat tests, because each time you put a needle into the uterus there is a risk of causing damage or a miscarriage. So you really have to

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try and get it right first time. Most of the time that is the case; in fact, it's remarkable how rarely errors are made. It is very rare now that normal fetuses are terminated. It is not so rare, but it is still fairly unusual for babies with severe handicap, such as spina bifida, to be born. Spina bifida is now not seen by paediatric surgeons: the screening programme for spina bifida has altered paediatric surgical practice. The same thing is happening with the ultrasound detection of urinary tract abnormalities. These are problems which would not have been detected when a baby was born usually; they might have turned up in childhood, with urinary tract infections and then renal failure. Paediatric urologists now are becoming neonatal urologists: this again is altering their practice. In other fields of medicine where you have the patient in front of you and you can repeatedly examine them, you could even repeatedly test them, although you may not wish to do that, for various reasons, but you do have a greater freedom. You may also have a larger variety or battery of tests. You don't necessarily say somebody has hypothyroidism because of one borderline blood test result, for example. Dr Malcolm Morrison: I am an orthopaedic surgeon, which may sound as though it's not got a great deal to do with this subject, but of course I am also a doctor. I think your talk illustrated beautifully how the goal posts are constantly changing both in medicine and in ethics, and sometimes (dare I say it) our legal brethren seem to concentrate on strict definitions, which are not always possible in medicine. What I wanted to bring out is that in most of medicine we're dealing with one patient. In obstetrics, of course, you've got two; mother and child. Indeed in terms of genetics we have three perhaps, because there is the father, or potential father. Ethics have changed inasmuch as it is not so long ago that termination of pregnancy was definitely frowned upon - that has now become legal; living together without a marriage certificate was also frowned upon - that is now commonplace; and people live in a society where we think we have got rights and we don't hear very much about responsibilities. What I would like to ask either you or anybody else in the audience is about the right of confidentiality, because you have on the one hand what it may do to the mother vis-a-vis the child, to the child if mother chooses to go ahead with a child that has got some abnormality, and for either the father, who mayor may not be the husband, and possibly even other members of the family. Where do people think that we, as doctors, should retain this information in confidentiality and when should we spread it? Professor Rodeck: Well I think it has been very useful of you to pose those difficulties so clearly. There are no easy answers. I think the most serious problems are probably engendered by the clinical geneticists with the new possibilities for screening. I alluded to the problem of Huntington's Chorea, for example, where people may come along and say 'Am I carrying the gene? Can you tell if my fetus is carrying it?' , or what is done more commonly is a diagnosis of exclusion, so that a couple, where the woman is pregnant, may have a test whereby they can be told that the fetus is not going to develop it in later life. But if they can't be told that then their risks remain the same. The problem is one of telling them about somebody else in the family who has got this risk, and that is

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where these conflicts arise. I see no way around it, other than to negotiate with those people and ultimately one may have to come down to a decision that one course of action is better than another or less harmful than another. When the information has direct bearing on something as important as whether to reproduce or to terminate or the choice of a partner in life, then there may be grounds for breaking the confidentiality. I don't think I've answered your question. A member: If a woman comes to you and says she wants to know what the sex of her child is and you suspect that the only reason she wants to know is that she wants to have boys and not girls, or vice versa you may refuse to do that test. But then she might say she has the right to that information, it's her body and it's her fetus. Likewise, the woman may quite rightly come along and say she wants an untrasound, and it shows that she's got a spina bifida fetus and she's advised to have a termination and she says no, because, quite reasonably a child with spina bifida can have an independent existence. But again that is going to impose enormous strains on the Health Service, which is a burden on us all. So does the public have a right to say that all children with spina bifida should be aborted? Professor Rodeck: Well I think absolutely not, to the last question, because it's in complete conflict with the autonomy of an individual, and I think that prenatal diagnosis should not have the condition attached to it that you must terminate if it's defective. The first thing you said was that it's the woman's right to find out. Well this depends on the extent to which a fetus is in fact her body. Of course, it isn't entirely, it's not just another organ like a kidney, but the degree to which that fetus is invested with personhood will vary from individual to individual, and of course also with the stage of pregnancy. I think, living in a practical world, one must face these problems. I've found one can't take a black or white view about that but has to take a gradualistic and somewhat flexible view. The President: And, of course, she has the right to know, because she's going to find out sooner or later. It's just the question of whether she finds out now or in eight months time, isn't it? Professor Rodeck: Yes. But then, of course, it's more difficult to do something about it. The President: Yes. Well I told members and our guests that Mr Wright had been good enough to tell me a good deal about Professor Rodeck's work, but I didn't read out this bit to you, Which I am now going to do, because now that we've had the advantage of hearing Professor Rodeck I know that we can all agree with this: 'He has ... ' (said Mr Wright) ' ... now returned to University College Hospital, both as scientist and humanitarian, with a particular knowledge and skill in the diagnosis and treatment of fetal abnormality and the problems that this can cause'. I am sure that we will all agree with that, particularly his humanitarian approach to it, and I would like to thank the Professor very much indeed for giving up his time to come and talk to us tonight. (Applause).