Chairman: We are now in public session and I would like to welcome Dr. Brian Denham, who is a visiting paediatrician, to this meeting of the Joint Committee on the Constitution. Dr. Denham, we have received your written submission which is at page 133 of the brief book. You will be glad to hear that the brief book has been tabled before the Houses of the Oireachtas and has absolute privilege.

The format of this meeting is that you may make a very brief opening statement elaborating on your submission, if you wish, which will be followed by a question and answer session with the members. I have to draw you attention to the fact that while members of this committee have absolute privilege, this same privilege does not apply to you. I now invite you to make a brief elaboration of your opening statement.

Dr. Brian Denham: Thank you very much indeed for inviting me to address you, Mr. Chairman, and members of the committee. I am a paediatrician. I have been a paediatrician for 30 years and I have specialised in diseases of the chest of children, that is mainly diseases of the heart and lung. On first sight one would think that is really a long way from any involvement with termination of pregnancy, and yet one does come across cases, and I thought it might be useful to your committee if I mentioned those.

As a paediatrician I am dealing with congenital conditions, that is conditions that children are born with and have throughout their lives. Much the most common, in my experience, is the problem with cystic fibrosis. Cystic fibrosis is a dreadful disease of childhood where the lungs, the liver, the intestine and other organs are affected. It is a very debilitating condition. The treatment is very intensive, requiring hours of physiotherapy, multiple medications, nebulisers every single day of the child's life. With very intensive treatment these children now survive to adulthood, although they did not when I was a medical student but it is a progressive and debilitating condition and eventually people with cystic fibrosis die from cystic fibrosis.

It is a genetic condition, in that once a family has had a child with cystic fibrosis there is exactly one chance in four that the next child might have cystic fibrosis. The condition is easily diagnosed by antenatal diagnostic techniques, so that families may be aware when they become pregnant again, if they have had a child with cystic fibrosis, of whether or not the next child is going to be affected. Of my patient cohort, approximately half of the families who are at risk of having a cystic fibrosis child seek antenatal diagnosis, they seek to find out. Some of those obviously go on to choose a termination of pregnancy and some of them choose, knowing the child has cystic fibrosis, to have the child.

It's often generally felt that choosing not to have a child with a severe disease like this is a selfish decision that the parents make because they don't want the burden themselves, but that's not my experience at all. It's a sad fact of life that if there are two children with this severe disease in the family, both children will do less well than if there is only one, just because of the burden of care the extra child throws on the parents and because of problems with cross-infection and drug resistance and many other things, so both children do less well. So, sometimes a family will seek a termination of pregnancy of a cystic fibrosis child just because they want to look after the child that they have - their living child - to the very best of their abilities. That is the commonest situation that I come across.

I mentioned two other conditions. One is children with congenital heart disease complicated by high blood pressure in the lungs. I believe this has already been fairly well addressed by my eminent obstetric colleagues because worldwide this is considered the mandatory indication for termination as early as possible in pregnancy, it carries a very, very high risk. A quarter of the ... there are four paediatric cardiologists in the country, so roughly a quarter of the patients who have now grown up and have Eisenmenger's syndrome - congenital heart disease with pulmonary hypertension - would be ex-patients of mine, but they have passed out of my care by that time.

To bring your attention to the extraordinary wide range of possibilities, I mentioned this other thing, the acardiac twin pregnancy where there are twin babies in pregnancy, one of whom does not have a heart and when that baby dies the normal child dies, but this is truly rarer than hen's teeth. The patient that I know about living in Ireland was No. 6 in the world and I think there are less than 20 at the moment.

I really just brought those out to counsel you not to draw up a list of conditions where one can or should have termination and a list where one can't or shouldn't or may not because as soon as you make a hard and fast list, there is no doubt medical advances and medical progress will throw up another one that will make nonsense of your rules. I think that's all I would say at this point, Mr. Chairman.

Chairman: Thank you very much, Dr. Denham. Before the members put questions, there are just a few questions I'd like to ask that arise directly from the submissions that might clarify or speed the questioning. First of all, in relation to the acardiac twin pregnancy, which is the first matter in your letter, you mentioned that you sought to obtain a ruling from the Medical Council on that, but I think in fairness to the Medical Council their practice under the Act is not to give rulings. Isn't that correct?

Dr. Denham: Yes, but they rule on whether or not you have behaved unethically.

Chairman: In fact, ultimately, the High Court in this country rules on that, I think. Isn't that right? The fitness to practice committee has a role there, but it is subject to confirmation in the High Court. Isn't that the strict statutory position?

Dr. Denham: That's right, yes.

Chairman: So, the Medical Council are unhappy about giving advance rulings on any operation because ultimately their whole system is subject to review in the courts. In relation to that particular condition, is it correct to say that both will die in that situation?

Dr. Denham: Both will die.

Chairman: Unless action is taken.

Dr. Denham: That's right, yes. When the baby without the heart dies the normal baby dies. There are a few very rare survivors, inevitably severely handicapped. The release of the toxic necrotic tissue into the circulation severely damages the baby. Survivors are extremely rare.

Chairman: So, it is a struggle to secure the survival of one in fact.

Dr. Denham: And inevitably handicapped, if survived.

Chairman: But both are doomed unless an attempt is there to save one in that condition.

Dr. Denham: That's right.

Chairman: In relation to the second type of case, the Eisenmenger's complex, we had evidence yesterday from Dr. Daly, Master of the Coombe, that early intervention in such an instance is a clinical option.

Dr. Denham: It is. In my experience, most of my patients with Eisenmenger's complex who find themselves pregnant because of the extraordinarily high risk the pregnancy poses ... the literature is very variable, but you are talking about a mortality of roughly one third of all patients who go through a pregnancy, some people say much higher than that. Most choose termination early in pregnancy. I am in the very fortunate position in not having to advise them or refer them. I just have to say that pregnancy is a very high risk and if you do find yourself pregnant, you need to talk to one of my obstetric colleagues very early.

Chairman: Yes, but in relation to Eisenmenger's, I take it is early intervention that is the clinical option that's canvassed.

Dr. Denham: The earlier the better.

Chairman: I assume that, in a sense, the later intervention may not affect the outcome. That's the difficulty really, isn't it?

Dr. Denham: In a patient who has got congenital heart disease of pulmonary hypertension - Eisenmenger's complex ... the words are often used interchangeably ... the actual word "Eisenmenger's" means that the blue blood has started to enter the systemic circulation, so the patient has a blue heart condition. Pulmonary hypertension is just high blood pressure in the lungs and it's only when it progresses a bit further that the Eisenmenger's part comes out, but they are different ends of the one spectrum. All interventions of any kind in a patient with Eisenmenger's complex are risky and the more invasive the intervention ... in other words, if you are talking about termination of pregnancy, late termination is much more risky than early termination. Carrying a baby to term is very risky indeed. Sadly, the most risky time is actually shortly after delivery, in the 48, 72 hours following birth. Tragically, these patients, when they do go through pregnancy, sometimes deliver and then collapse 24, 48 hours later and leave a baby an orphan.

Chairman: You have explained to us your experience in relation to cystic fibrosis, but you did recommend a solution as well in your submission, which was to restrict the Offences Against the Person Act in relation to its application in hospitals, which you listed as regional, university and maternity hospitals.

Dr. Denham: Yes.

Chairman: I just want to clear up what hospital you are referring to there exactly. I take it the maternity hospitals would be the three principal hospitals in Dublin, first of all.

Dr. Denham: Yes.

Chairman: The university hospitals would extend that to Cork and Galway.

Dr. Denham: Limerick.

Chairman: And Limerick. The regional hospitals would be hospitals operated by the health boards-----

Dr. Denham: Yes, and their agencies, major centres. What you don't want to see is the abortion clinic, in other words, a very small centre doing virtually nothing else.

Chairman: We heard from the Masters of the three principal maternity hospitals in Dublin yesterday and it would be fair to say that their hospitals are responsible for a great amount of the volume here. I think that's a fair assessment.

Dr. Denham: That's right, half of all the deliveries in the country.

Chairman: About half of all the deliveries in the country. In relation to the medical conditions, I must say that the impression I formed - and subject to correction by the members on this - was that they certainly wanted that measure of clinical freedom there in relation to threats to the life of the mother. There was no question about that.

Dr. Denham: They give their patients superb care too. I think we have got one of the highest standards of maternity care in the country. I would agree, I think to fetter it in any way would be a mistake.

Chairman: On the question of the scanning and congenital deformities, again I think I am summarising their position fairly in saying that they weren't prepared to go further than the case of the lethal abnormality clearly diagnosed from the scan. That, if you like, was the limit but you have opened a somewhat wider question. That was their position in terms of how far they felt they could go on that question at this stage. I am putting that to you.

Dr. Denham: There is no termination of pregnancy available in Ireland for cystic fibrosis families at present. Any that need it travel overseas but there is an ante-natal diagnostic facility that is provided quite widely now in Dublin, Galway and Cork to detect whether or not a child is affected by what is ultimately a fatal disease, although it takes a very, very long time and requires an immense family effort. I cannot emphasise enough to the committee the burden of care that families of children with very severe chronic illness accept. The families are wonderful, the patients are wonderful but the treatment takes up so much of the family time and so much effort and goes on for so long that these families have no time for anything else. Our function as doctors is to support them as very best we can. For some families the idea of having another child with the same disease is just intolerable because they know what it will do to them and to their existing child. Some families accept it without too much anxiety. Either way, our duty as doctors is to support them and help them look after their children to the best of their ability.

Chairman: Thank you very much, Dr. Denham.

Deputy J. O'Keeffe: Thank you very much doctor. Your evidence is very helpful to us but let me try and marry your medical expertise to the kind of constitutional or legal requirements we have to bring in recommendations on. Can I take it from your submission, indeed your evidence today, that you do not see any case whatever for introducing an absolute constitutional ban on abortion?

Dr. Denham: I think that would be very unfortunate.

Deputy J. O'Keeffe: I take it that you would see it that, even as was evidenced yesterday, existing medical practice would be affected by such a constitutional ban?

Dr. Denham: That depends on your definition of abortion - whether existing medical practice would be affected. I take it the masters told you it would be if there was an absolute prohibition.

Deputy J. O'Keeffe: Moving to the question of legislation, our basic law in this regard is the Offences Against the Persons Act, 1861. Do I take it that, in so far as there is legislation against abortion here, your view is that whatever treatment is necessary in relation to the life of the mother - if the life of the mother is at risk, there should be no statutory restriction on such treatment?

Dr. Denham: Eisenmenger's complex is the condition of which I am aware and that I have dealt with where the life of the mother is seriously at risk from pregnancy. I would again strongly counsel against any restriction on medical intervention in that situation. I think it would put a lot of women's lives at serious risk.

Deputy J. O'Keeffe: Carrying that further to the question of a pregnant mother where there is a lethal foetal abnormality, what is your view in relation to the sort of legislative situation which should be provided for there?

Dr. Denham: I don't deal with that situation at all, except in terms of cystic fibrosis families which is not a condition like anencephaly where the baby dies shortly after birth.

Deputy J. O'Keeffe: In relation to encephalitis-----

Dr. Denham: Anencephaly.

Deputy J. O'Keeffe: ----- the death of the baby is certain.

Dr. Denham: In anencephaly the death of the baby is certain shortly after birth. Some of them live hours but frequently a very, very short time indeed. That's where the brain has not formed. I don't deal with that condition and I don't see mothers who are pregnant with that condition. The ones that I see are the more difficult situation, that is the families who have cystic fibrosis. Although eventually a fatal condition, with intensive treatment it is entirely compatible with survival up until adulthood - with intensive treatment. These families are hugely burdened and there is the one in four recurrence risk so that, as I said, about half of my patients choose to find out whether or not another pregnancy is affected or is not affected.

Deputy J. O'Keeffe: In some of those instances, having got diagnosis-----

Dr. Denham: They go both ways.

Deputy J. O'Keeffe: -----there is a decision to terminate, is that correct?

Dr. Denham: In some there will be a decision to terminate and in some they decide to carry the baby and look after it. When they do I continue to look after those patients. I don't hear about the ones who choose termination because that is done from the diagnostic facility. They make the diagnosis and they counsel them.

Deputy J. O'Keeffe: But under our existing law and medical practice, where there is such a decision to terminate-----

Dr. Denham: It can't be done in this State.

Deputy J. O'Keeffe: That does not occur here?

Dr. Denham: It does not occur in this country.

Deputy J. O'Keeffe: It is a question of the pregnant mother going to England.

Dr. Denham: They all travel - either to the North or overseas. Even though termination of pregnancy is very restricted in the North of Ireland, this is one of the conditions that they would consider entirely acceptable to terminate.

Deputy J. O'Keeffe: The $64,000 question is whether it is your view that, in such a situation, there should be provision under our law for such a termination to be carried out here, provided it is carried out in a recognised maternity or health board funded-----

Dr. Denham: I think it is very unfortunate that these families have to travel overseas - the ones that feel it is necessary for the life of their child and their family to terminate a subsequent pregancy. That means that the patients who can avail of it are the patients who have the financial, educational and emotional resources to travel overseas. To a certain extent, the families with two and three and even four cystic fibrosis children tend to be in the poorer sections of our community where the educational resource and the knowledge and the financial resource to travel are not available.

Deputy J. O'Keeffe: Is that the only or the main area where you are suggesting that there should be statutory provision for termination?

Dr. Denham: I have no expertise in other areas but you could ask every doctor in the country and nearly all of them would have knowledge of one or two conditions like this. There are other conditions of other organs and other bits of the body that ... these are just the conditions. Cystic fibrosis is a condition I have specialised in and I have a great deal of knowledge about it. I would hate to start talking to you about dreadful liver disease or something which can be equally bad. I just do not have the knowledge base to advise you.

Deputy J. O'Keeffe: Therefore, do I take it that your viewpoint, from within your own experience and your general knowledge of the expertise of others, is that there should be some degree of flexibility in our laws, that where there is expert evidence available of these conditions, a provision should be made for termination to be available-----

Dr. Denham: Yes, I-----

Deputy J. O'Keeffe: -----provided it is carried out in one of our recognised maternity or public hospitals?

Dr. Denham: I have a great faith in the ethics committees of our hospitals. I think they have by and large run the hospitals very well, supervised what goes in them very well and I think if you said tomorrow that termination of pregnancy is freely available to anyone subject to the rulings of the medical ethics committees, I think you would find there would be very very few terminations and that they would be looked at very carefully by the hospital ethics committees. Without having to legislate for specific conditions, which is very difficult, I think the ethics committees would look at each case in great detail and-----

Deputy J. O'Keeffe: That would then allow the decision to be made by the-----

Dr. Denham: By the clinicians.

Deputy J. O'Keeffe: -----medical ethics committee of each hospital.

Dr. Denham: That's right. The decision, the advice would obviously come from the doctors looking after it and the decision would be supervised by the ethics committees.

Chairman: Senator O'Donovan and then ... Sorry, Deputy McManus.

Deputy McManus: Thank you very much indeed, Mr. Chairman, and thank you, Dr. Denham, for coming here. I think it is very interesting that you presented a different perspective as a paediatrician to the matters we've been discussing, and you certainly opened up issues that are pretty large and complex. I appreciate that you are not directly engaged in advising or informing the parents about travelling to Britain or travelling overseas to have a termination, but do you feel, apart from the issue of class or people not being able to afford to go, do you think that it is creating difficulties for you medically or for obstetricians medically? It has been put to us that, for example, autopsies are not necessarily carried out and there is the issue of after care, that also the standards in some facilities are not necessarily top quality. Do you think that is a matter of concern?

Dr. Denham: I'm quite sure it is, although I wouldn't have any knowledge as to how much of a concern. What is perhaps of concern is that the need to travel throws in a delay. There is absolutely no doubt that the emotional and other side effects following a termination of pregnancy - and consideration of a termination is one of the most anguished decisions any woman ever has to make - I don't think anybody is more aware of the fact that abortion is wrong than the woman who is faced with choosing between two wrongs. I think she is the person deeply involved, but there is no doubt that the earlier that decision is made, if they are going to get termination, the earlier the better, and the need to travel, of course, throws in a delay which adds to the trauma that these families suffer.

Deputy McManus: It would be clear that there would have to be a change of legislation, whether it is the way you propose or otherwise, but presumably there would also have to be a change in the Medical Council guidelines for hospitals and doctors to have that clinical judgment, the freedom of judgment.

Dr. Denham: You are getting into very jesuitical arguments here, dancing on pinheads and what is an unborn and what is viable and what is not viable.

Deputy McManus: You mean-----

Dr. Denham: -----but yes, I think the guidelines are reviewed regularly and frequently.

Deputy McManus: Okay. Maybe it is unfair to ask you this, but in terms of defining - you have mentioned cystic fibrosis but presumably there are other conditions that are equally worthy of scrutiny.

Dr. Denham: An enormous number of them. It is just cystic fibrosis is the most common-----

Deputy McManus: Right.

Dr. Denham: -----and Ireland has the highest instance of cystic fibrosis in the world, so it is a particularly Irish disease and one we need to take responsibility for.

Deputy McManus: So what you feel is rather than trying to prescribe a formula, you are saying leave it to the doctor - obviously with the woman - but leave it to the doctor and the ethics committee within the hospital to determine each individual case.

Dr. Denham: Correct.

Deputy McManus: Okay. Well as someone maybe who has lived long enough to have had certain difficulties in the past with ethics committees on very basic issues like tubal ligation and even further back on family planning, why do you think that ethics committees can be entrusted with this kind of a role?

Dr. Denham: There are clearly some hospitals, particularly those run by religious orders, that would find any form of termination of pregnancy totally unacceptable and I don't think it would be right to impose upon them a duty to do so. I think that whereas, you know, there are other hospitals, particularly the health board hospitals and things, where those restrictions don't apply. There is a wide variety. Obviously if a scheme is set up and one finds that there is a group of patients in desperate need of termination or not being offered, or indeed you find that there is one hospital that you might feel was abusing the system, that is a time to introduce some additional regulations, but I suspect to try and regulate it from the outset will just cause problems.

Deputy McManus: Well maybe that leads on to my last question. We have very excellent doctors in this country but inevitably they are not all 100% excellent all the time and certainly there has been a lot of concern, for example, in relation to the high level of hysterectomies in one particular hospital, where it would appear that a doctor was able to practise without any kind of regulation for quite some time. Are there not dangers in the sense of putting these hospitals outside of the law in this particular area that we could end up with a bad doctor practising bad medicine without having the regulatory framework there to protect the patient?

Dr. Denham: I think a regulatory framework is reasonable, in other words, a reporting system or something that would allow one to keep an eye on what's happening. I think that is very reasonable. I think a restrictive framework is what I counsel against, in other words, saying that you must act this way in this situation and not in another because the medical progress is occurring so quickly and so fast. I mentioned the case of the acardiac twin really just to show you how rapid medical progress is. We are talking about a very few cases in the entire world, but next year there will be something else available and sooner or later there will be an Irish patient who will need the intervention.

Deputy McManus: Thank you very much indeed, Doctor.

Chairman: Senator O'Donovan.

Senator O'Donovan: Thank you. I would like to welcome the doctor and to note that you are the sixth witness to appear before us and give evidence. In your submission that you've made, you have been very frank and you have put forward the most liberal view we have heard to date, that your option would be for I think, as you put it, the more liberal of the options in the thing, and I think that your moral courage and frankness must be appreciated in this respect.

Just a couple of things. Coming to cystic fibrosis, and obviously as a lay person I have some understanding of the serious nature of it and the huge encumbrance it is for both parent and the very debilitating effect it has on the person itself, would I take it from you in your answers so far that, would you think it more appropriate in such cases that termination or, to use another word, abortion might be the real solution in such instances? In other words, when you come across the situation say after three or four months of pregnancy that this situation exists, would you, in your professional capacity, counsel or advise, "Look, you are facing a serious up-hill battle", and would you go beyond the word "choice"? Would you be inclined to suggest?

Dr. Denham: I think as soon as one suggests to a woman in that situation what they should do, you're ... that's a very paternalistic attitude. I think all one can do is to tell them what is likely to happen. If we know a foetus is affected by cystic fibrosis, you can .... they will already have a member of the family affected, so they know the work involved, and the only addition I tell them always is to consider how this is going to affect your living child, your present child. The additional burden of looking after another one, coupled with the problems of cross-infection and antibiotic resistance which hugely complicate treatment and make it much more difficult and much more expensive, means that it is a sad fact of life that where two children in a family have cystic fibrosis, they both live less long and have poorer quality of lives than where there is only one. Sometimes when people, a lay person says, "Oh, I've been counselled to have a termination but I can't do that, it's a very selfish decision" and its because they're thinking of themselves, but if they bring their entire family into the picture and think about their living children and the rest, it makes it, it's frequently a very unselfish decision and made against the person's own inner desires and feelings. They may well want to bring this baby to term, despite the fact that it's severely ill, but they do not want to inflict their living child with the diminished quality of life that that would entail. It is a very, very difficult decision for any woman and I mean we support our families. We direct, we counsel them non-directively and support them to the very, very best of our ability whatever decision they make.

Senator O'Donovan: You mentioned, Doctor, that Ireland per capita has the highest ratio of cystic fibrosis in the world. In that regard, is that down to a certain maybe fettering of our religious beliefs or is it due to ignorance, or why are we out on a limb, so to speak, or have you any opinion to offer on it?

Dr. Denham: We have a very high incidence of the cystic fibrosis gene. One person in 20 is affected by the cystic fibrosis gene. Somebody in this room carries the cystic fibrosis gene and if your partner happens to be the same, well then you're at risk of having a cystic fibrosis child. Now, we've got about the same genetic incidence of the disease as does Scandinavia and Denmark. It all boils down to a few randy Vikings who came over and spread the gene around. But in Scandinavia, of course, antenatal diagnosis and termination of pregnancy would be regarded as absolutely normal if a baby was known to be affected by cystic fibrosis. So, although in Ireland we've a lot of families with two and even three children with cystic fibrosis, that is unique in the world. Nowhere else in the world has that happened and this is why we have more of the disease than the other countries.

Senator O'Donovan: Next might I ask you, or is it possible for you ... we've had a lot of interaction from the various questionnaires here and the witnesses about the definition of abortion vis-à-vis termination. I understood from some of the experts before us that they would see termination of a pregnancy in some of the extreme cases that you mentioned where ... you mentioned one today and also this pregnancy that develops outside the womb and others. There are limited numbers of areas. Would you see any of those terminations as being abortion, because once abortion is mentioned for anybody on this side or for ... there's an awful exclamation mark goes up as to ... you're into the realm of abortion? But is there a definition of abortion in your view, or is there certain areas where termination is not abortion, or is there a defining line, or is it all abortion of some sort?

Dr. Denham: I can't say. I'll consider the question but there's really no difference between termination of a pregnancy which happens to be outside the womb. I mean, there are one or two of those in the world that have gone to term and the baby has been delivered, so that you can't say it's intervention that was ... that is absolutely indicated----

Senator O'Donovan: One of the other expert witnesses mentioned the seismic shift in Irish society, be it wrong or right. Having regard to maybe our religious hang-ups or background, would you consider that the option you promote - and I'm quite certain you do it with the utmost sincerity, etc. - that that would be acceptable to the Irish people at the minute, having regard to our existing Constitution and, be it wrong or right, there is provision in the Constitution? Could you see this seismic shift being evolved easily or is going to be-----

Dr. Denham: Well, it's no doubt occurring. I mean when I first commenced practice in cystic fibrosis and when antenatal diagnosis first became available with the genetic techniques, very, very few families wished to avail of it. There's no doubt that as the years have gone by, more and more become aware of it and take it on board as being a reasonable option for them. At the moment, as I say, it's about half of all families seek antenatal diagnosis, families with cystic fibrosis. So, society is changing, and changing very fast and I've no doubt will continue to change.

Senator O'Donovan: Would you accept, Doctor, that there is a sort of a legal tight rope at the minute for people like you or others dealing with gynaecology, obstetricians, etc. in regard to the uncertainty that's there at the minute? You have, on the one hand, the shackle of the constitutional provisions and, on the other hand, maybe a law that's ... we're primarily, apart from the X case, dealing with the Offences Against the Persons Act, 1861, I understand. Is there a quagmire of legal uncertainty existing for practitioners, leaving aside the ethical side of it? I accept that you've great belief in the ethical code, but is there a current quagmire of legal uncertainty pertaining to practitioners currently?

Dr. Denham: Well, there is uncertainty. But I'm in the very fortunate position, you see, of looking after these families but not having to, even the ones that seek termination, not having to refer them. That is fortunately done by the diagnostic units.

Senator O'Donovan: And obviously in such situations, I accept you would not be at the coalface of the situation. In conclusion, I would just ask one final question. You may or may not be in a position to offer a view on it. I would sometimes see the concept of abortion with this mens rea or the mental view. It's like in the case of murder, where you intend to do something. Is there any possibility of a situation or common ground where you could define abortion, where some person of sound mind, sound physical health decides to go and say, "Look, I do not wish to continue with the pregnancy for one reason or another"? At the minute, obviously they have to go abroad to have such an abortion. And the other scenario where in extreme medical conditions, some of which you've worked with and others have mentioned them, like ectopic pregnancies etc., that in these conditions where it would be more morally correct, so to speak, that termination would occur to save at least one of the lives. Is there ... do you get the point I'm making that in certain instances I think there's a deliberate, if I could use that word, intention and the mind made up by somebody in full health to go and have a termination as against where persons who are in an extremely difficult medical situation have little or no choice? Can you see a difference in that sphere or----

Dr. Denham: I see your point, but I think I'll just say what I said before. I think it is the most anguishing decision a woman ever has to make and I do not think that anyone is more aware of the fact that a termination of pregnancy is wrong than the woman who is faced with two wrong choices.

Senator O'Donovan: I accept that, but the follow on from that is what one of your predecessors said yesterday, or perhaps the day before, namely, that he came across one instance in Great Britain where a young woman came in for the third time for an abortion out of her own free will - the liberal approach adopted in Great Britain. Surely, on the third occasion, or even the second occasion if it was so traumatic to make the decision, would she not have learnt the lesson? These are cases where, I understand, that the child in the womb and the mother were in perfect health.

Is there a danger abroad - I mentioned this word yesterday - of opening the "floodgates", whereby a lot of people might say, okay, you are dealing with situations that are extremely difficult. They may say why not adopt the same situation that pertains in Britain under the 1967 Act or, maybe in the US, where abortion is readily available as a means of contraception?

Dr. Denham: That is using abortion as a means of contraception, and I think that where it is widely used as a means of contraception, as it was in Hungary some years ago, I think it does, to a certain extent, undermine the morality of society. Certainly, I had one patient, a refugee from a middle eastern country who came in with a child that we were looking after in Our Lady's Hospital, Crumlin. When the junior doctor took the medical history and found that this woman had had six or seven terminations of pregnancy as a means of contraception there was a very uncomfortable feeling in the ward at the time that this was a very extreme way of dealing with contraception. When it is used in that way it does undermine morality and I would much rather see a good programme where unwanted pregnancies did not occur, as they have in Holland, which has a much lower instance of termination of pregnancy than we have in Ireland, even though there is a much more liberal regime.

Senator O'Donovan Thank you, Doctor.

Chairman: I call Senator O'Meara. I ask members to try to be brief with the remaining questions and to focus on the issues arising from the submissions.

Senator O'Meara: Very briefly, in relation to the last remark, one would only have to have compassion for somebody who found themselves in a situation where termination is the only choice that they have.

Dr. Denham: Terrible.

Senator O'Meara: Dreadful. You said that we have the highest incidence of cystic fibrosis in the world. What numbers, how many babies are born-----

Dr. Denham: In broad terms there is a thousand families with cystic fibrosis in the country at any one time----

Senator O'Meara: There are----

Dr. Denham: ----and in broad terms there is another thousand who are either going to have a cystic fibrosis child in the near future or have had a cystic fibrosis member who died.

Senator O'Meara: So, per year, what numbers?

Dr. Denham: We are only talking about 30 or 40 new patients every year.

Senator O'Meara: Yes.

Dr. Denham: This will become very relevant, Mr. Chairman, because the health board is on the verge of setting up a neo-natal diagnostic facility whereby cystic fibrosis would be picked up at birth as part of the heel, the Guthri test, that is checked on every baby at birth. When this happens, and it is likely to happen within the next year to 18 months, then diagnosis will occur much earlier and patients will be diagnosed at birth. That, of course, means that the family will plan their future at that time. It is unfortunate at the moment - sometimes you pick up a child with cystic fibrosis who is, say, six months or a year old and then you look at the other members of the family and you find that, lo and behold, the four year old with asthma, or who was thought to have asthma, also has cystic fibrosis and has had it without treatment all that time.

Senator O'Meara: My understanding is that with genetic advances, that with DNA coding and that, it is generally expected - maybe this is just a lay person's view through the media and so on - that we are looking at a situation where genetic diseases, such as this, will effectively be eliminated in a number of decades or will possibly be-----

Dr. Denham: The only way you eliminate them is to ensure that people do not pass on their cystic fibrosis genes.

Senator O'Meara: I think it is worth just mentioning - there may be no need to mention it - but in relation to families where there is more than one child with cystic fibrosis, I think in general in this country we have had the view - possibly it is changing because the country is changing - where there has been a great welcome extended by families and by society generally to a disabled child or to a child which is not in medial or scientific language one would consider normal. There has been, I think our attitude in this country-----

Dr. Denham: These families are wonderful.

Senator O'Meara: Yes, absolutely.

Dr. Denham And the extended families are wonderful.

Senator O'Meara: Yes.

Dr. Denham: Which is why we devote so much time to them and try and help them to the very best of our ability.

Senator O'Meara: And societal and community structure does support people very well.

Dr. Denham: Yes. The schools are good, the health board structure leaves a lot to be desired still, but we are working on it.

Senator O'Meara: Working on it. Obviously, and from your remarks we know, and from remarks made by other doctors who have been here, that a number of parents are making a decision to terminate pregnancies, such as where cystic fibrosis is identified and in other cases where Down's syndrome is identified, for instance. So, parents are already making choices, in other words a choice is available. In the scenario you set out in your letter - I would like to thank you for it - as explored by Deputy McManus, you are looking at a situation where, in effect, an ethics committee in a hospital would be making that decision if one were to advance down that road.

Dr. Denham: Well, the decision would obviously be made by the parents----

Senator O'Meara: The initial decision, yes.

Dr. Denham: ----on the advice of their consultant, and whether or not one proceeded would be in the hands of an ethics committee.

Senator O'Meara: At the moment it is not.

Dr. Denham: At the moment it is not.

Senator O'Meara: At the moment the decision is purely in the hands of parents to do that. My reading of the Medical Council guidelines would be that if one were to allow for a situation of allowing for termination in this country it would cut very squarely across the Medical Council guidelines-----

Dr. Denham: I think that is true.

Senator O'Meara: ----which talks about the deliberate and intentional destruction of the unborn where a mother's life is not in danger. Now, clearly, in the case of cystic fibrosis pregnancy a mother's life is not normally in danger.

Dr. Denham: No, the mother's life is not in danger, but the family is in danger.

Senator O'Meara: And the mother's health is, strictly speaking, not in danger.

Dr. Denham: No, but the entire family is in danger. The birth of a second severely handicapped child into a family frequently destroys that family and frequently breaks the family up. Even where it does not it throws such an extraordinary burden on the family that their life thereafter can certainly not be considered normal in any respect.

Senator O'Meara: But, medically speaking----

Dr. Denham: But medically speaking you are quite right.

Senator O'Meara: So, medically speaking, it would be the deliberate and intentional destruction of the foetus.

Dr. Denham: Absolutely.

Senator O'Meara: That is fine, I just wanted to clarify that. Thank you, Chairman.

Deputy McGennis: My question has largely been answered with the last question. Thank you for your submission and for being here. You have recommended in your submission that we should go for the liberal option, but you have some safeguards. This would mean the option of permitting abortions where there is a congenital malformation. Now, you have dealt specifically with cystic fibrosis, because it is your area of expertise. You would not be suggesting that cystic fibrosis would be on a list of illnesses or congenital malformations where abortion would be permitted, I presume, because if that was the case, certainly the Masters who spoke to us yesterday expressed concerns about listing cases - this is even in life threatening situations.

What you are suggesting is that we would go for the most liberal regime and that the mother in consultation with her doctor would make the decision and then it would be up to the ethics committee of a hospital to decide whether that would be permissible or not.

Dr. Denham: Well, they would obviously regulate the practice. Ethics committees in hospital do regulate the practice at present.

Deputy McGennis: It seems to me that what we would end up with would be a situation where an illness like cystic fibrosis came by way of, if you like, certification from the doctor who is treating the mother. Certainly yesterday, if not the day before, we discussed the position where 98% of the abortions which are carried out in the UK at the moment are done----- There are four headings, I think number three is the one which turns up in 98% of cases where the psychological welfare of the mother is cited. It may be stretching credibility a little to accept that statistic and people would maybe jump to the conclusion that the doctor who sees the mother in the first instance and the doctor who carries out the termination ... are they absolutely convinced that is the situation and yet they certify it in a huge number of cases - I mean, five million abortions in whatever number of years on that basis.

Dr. Denham: I do not have any knowledge or experience so I couldn't comment.

Deputy McGennis: Would you not feel that it would be highly unlikely that an ethics committee might overturn a request or a decision of the doctor and the mother for a termination?

Dr. Denham: I do not think anyone is going to start doing large numbers of terminations of pregnancy in Ireland. I do not think anyone is proposing that, suggesting that or thinking of doing it.

Deputy McGennis: I suppose my main question is that you were not seeing it as part of a list but we are still going back to where it is the mother in consultation with her GP and then another authority makes the decision. Thank you.

Chairman: Just one matter. A reference was made by Senator O'Meara to the guidelines issued by the Medical Council but of course the constitutional framework here is more than a guideline and in a sense the proposal you have canvassed, if it is to be placed into the present constitutional context, could only refer to threats to the life of the mother. Is that correct?

Dr. Denham: Again, you start to dance on the heads of pins, don't you, whether a threat to the family life and family structure is ... and something that is going to adversely affect the health of an existing child is indeed a threat to the life of the mother or not?

Chairman: But by equalising the life of the unborn and the life of the mother in the Constitution, a very high standard is imposed - it's hardly dancing on a pin. It is quite clear in a way, is it not?

Dr. Denham: Fairly clear and fairly onerous.

Chairman: The masters in their discussions with us on this question yesterday, in their evidence yesterday to us, raised specifically the question of the lethal outcome. That was specifically raised and they accepted there were wider questions beyond that but they seemed uncomfortable with them I have to say.

Dr. Denham: I would agree I think. You know, most of my obstetric colleagues, when one comes to discussing the problem of cystic fibrosis, are uncomfortable. It is a very difficult area and there are no easy answers. I cannot tell you what is right or wrong any more than I can tell an individual patient what is right or wrong for them because what is right for one family is wrong for another. As I said before, we counsel them non-directively and we support them to the very best of our ability whatever they decide.

Deputy Enright: I would like to join with the other speakers in thanking you for coming this morning. In regard to a woman who is expecting, who is pregnant and expecting a baby whom you have diagnosed as suffering from cystic fibrosis, is that normally a difficult pregnancy for the mother physically, as distinct from mentally?

Dr. Denham: No, the pregnancy is completely normal.

Deputy Enright: Completely normal?

Dr. Denham: Yes, no difficulty whatsoever with the pregnancy or delivery.

Deputy Enright: You mentioned the actual physical problems associated with cystic fibrosis - the problems of their lungs, the problem of breathing difficulties, the amount of medication they have to take regularly, the level of physiotherapy that is required. Those are all physical - what is their mental capacity? Can you give me an idea of, say, ten patients who suffer from cystic fibrosis? Are they below average intelligence-----

Dr. Denham: Their intelligence is normal, the brain is not affected. The lungs, the liver, the intestine, the salivary glands and the reproductive tract are all involved ... and the pancreas - many of them get diabetes, they get liver failure, they get lung failure, they have severe digestive problems. It is not uncommon for a patient with cystic fibrosis to be taking well in excess of 100 tablets every day as well as all of the physical therapy but their brains are normal. If well looked after and well treated, their quality of life is very good for many years but eventually deteriorates and it is a very bad disease.

Deputy Enright: Certainly they are individuals who actually are fully aware of their surroundings when they are born?

Dr. Denham: Completely normal.

Deputy Enright: Thank you very much.

Dr. Denham: Thank you.

Chairman: Dr. Denham, I would like to thank you very much for coming today. I appreciate you have a very busy schedule like many medical men and women and you are very good to assist us. You can read a lot in the newspapers these days about how politics are held in a certain way by some sections of the population but you will be surprised to learn you are being a bit of a politician yourself coming here today and I think that is the most important thing about citizenship.

I really do want to thank you very much and I want to take the opportunity at this stage to thank all the members of the medical profession who have helped us. It has been very enlightening to us as a committee and I'm sure to the general public and your assistance as doctors and as citizens of Ireland is very much appreciated. Thank you.

Dr. Denham: Thank you.

Chairman: We will suspend the session for five minutes and then we will take Dr. Anthony Clare.

Sitting suspended at 11.38 a.m. and resumed at 11.45 a.m.

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