The Malta Independent 11 August 2022, Thursday

Chance or choice – thoughts on PGD

Pierre Mallia Sunday, 31 July 2022, 07:51 Last update: about 12 days ago

It is commendable that government and the Opposition agreed on the issue of Prenatal Genetic Diagnosis (PGD). It is also commendable that politicians were allowed to vote their conscience. This was indeed a historical breakthrough in bioethics when we were confronted with an issue which seemed to have created a moral problem. Of course, the problem was there – the issue of discrimination and the issue of freezing an embryo which probably no one would want to adopt – more on this further down. An open debate does not seem possible when people only allow the scientific information that suits them to confirm their preconceived ideas. Science states facts; it is not to be used as a tool for all moral questions. Science does not do morality. And when science says that it is difficult to define when the life of a human being begins, whether it be a fertilized egg or when there is a brain, or even when there is a body form, it remains only a matter for morality based on what morality one’s values or religion chooses.

ADVERTISEMENT

Indeed, in the US, as I mentioned in a previous article, a gynaecologist made a bad moral judgement when she said that when a heartbeat is detected on ultrasound in the very first stages of embryo development, it is only an electrical flicker. There can be no wiring, I said at the time, without the walls. The nervous system and the muscular system develop together. As scientists we can only participate in moral debate. Conversely the issue of conception, although commendable, seems to reflect only a Christian, if not catholic position. Does this mean that all other religions do not take a scientific point of view? This seems to have coincided with the dogma of the Immaculate Conception and with the teaching in the Bible that God knows and loves you even when you are in the womb. But the latter does not specify the date. And it is also a fact that until medieval times, following Roman and Greek teaching, the Church accepted that the soul enters the body when there is a brain. This is also reflected in Dante. So, the teachings do change. And, incidentally, neither the Greeks nor the Romans condoned abortion. Be that as it may, the main ethos of bioethics is not to defend one institution’s morality against another – be it liberalism or some other. The ethos is nowadays based on a democracy which allows discussing and enhances solidarity and equity.

But back to the original argument, the reasoning here is to allow a couple who carry the risk of a genetic disorder to have a child without that disorder. First, consider a couple who needs IVF for infertility but who also have a genetic disorder. We fertilize a number of eggs. The question is, should we give a possibility to all or not? In other words, should we allow things to chance or to choice? If we allow them to chance then the couples, depending on their disposition, have to accept whatever comes. This would be indeed a mature couple who believe in the sanctity of all the fertilized eggs. But many couples – and we cannot be judgemental unless we have experienced their position – will pray for a healthy child, which shows the same inherent predisposition; only that one is a belief in God’s will and the other based on chance and probability – indeed a Russian Roulette. The alternative, then, is to remove the cells with the defective gene and allow them to have their minds at rest. In this case society allows for the possibility of a choice. Whether one agrees or not, based on discrimination or freezing, we ought to also consider solidarity.

It does not stop there however. We freeze embryos so as not to kill them. These can be given up for adoption and many, albeit even myself, have argued that no one would adopt such an embryo unless for a heroic reason or to make a point. Both would be commendable. But there are issues here and I would be the first to plead mea culpa. Those who would not adopt these embryos, if they were in a position to adopt, probably have no right to speak – they are not exactly out to save such a baby if they were in a position that they wished to adopt an embryo. All parents want healthy children and this is not egoistic. The couple who heroically or for solidarity adopts such an embryo can argue that they have “saved” the embryo; but then they would have to deal with a child who will learn that it was abandoned by its genetic parents. Moreover, can the issue that it has a possibility of developing Huntington’s be held back, with all the consequences thereof? If Genetic cures become available this may be an option. But if these do become available, probably the same parents who chose to freeze the embryo until such time will take it. The good news is that these cures are around the corner, and parents, who choose to freeze the embryos carrying a defective gene, will then be able to give it a life without the disability – something the same child will be forever grateful.

These are the difficult questions we face in bioethics. However, given the empathy we ought to have for people, the current law allows couples to make a call. They have the possibility of stopping the gene going down their family tree. This is a personal choice. Burdening them with too many moral implications is trying to coerce them one way or the other. Coercion removes the freedom of a voluntary choice, for someone who needs persuasion or indeed has to be coerced by society, one way or the other, is not making a free choice. We as a people are forcing something on them. If we had a cure for Huntington’s we would take it. Of course, the state cannot encourage people, as happened in Cyprus with thalassaemia, to eliminate the disease. This would indeed be eugenics. But if we reason that freezing an embryo is eugenics, then we ought to reason that if we had a genetic cure for the disease and we manage to eliminate it, that would be eugenics too. True eugenics involves deliberate killing.

So one has to commend the constructive dialogue. It took courage on both sides. The PN had to change the position which it had made public. That took courage. The PL had to introduce it, which also takes courage. There are fears that this may lead to the road of abortion. Why this is so I cannot really understand for freezing is not abortion. Had the debate been to discard the embryos and not freeze them, as happens in some countries, then, yes, the road would be open. Then the PN may not have budged. But even if we do not like the selective freezing of embryos, I think that if we are not ready to give these embryos life, then we have no right to speak. Someone said this is not fair to say; but morality is normally based on “what if I were in that position”. Morality without empathy is not morality at all. We are simply condemning a couple who already has to suffer one of them being at risk. Not wanting one’s children to inherit the same condition is natural (unless one carries the disease with pride – as has been known to happen). This is an argument where as a society we give them an option. It is a moral option, to be sure. The onus is also on them to make that moral choice. But those of us who are not in that position ought not to consider disallowing such a choice.

Indeed, there are issues with the sanctity of life. This will come whenever we politically face the abortion debate. We need to meet with Practical Reason, (man’s gift over animals)  to decide which terminations are licit and which are not – such as danger to the life of the mother when the principle of double effect is not clear. To say none are licit or all are, are two extremes both of which are morally wrong, even if for the fact that they sacrifice universal fraternity, compassion and solidarity. Saying we will give them support while upholding conservative or liberal views is too naïve. For these people do not really get support throughout their lives.

Alternattiva Demokratika said that His Excellency Dr George Vella should be impeached. Now impeachment is a charge of misconduct, in the USA, for people in high office. Closer to home, in the UK, it is to question the integrity or validity of a practice. Now to question Dr Vella’s integrity or on misconduct is absurd and can only be said by someone who does not know him. Not only, he is a truly humble person. He had made it amply clear before being made President that he will not sign any Bill for abortion or euthanasia. So his integrity will always be preserved. While freezing is not killing, it is up to him to decide whether such a Bill constitutes abortion or indirect killing that such embryos will eventually end up not being used, unless of course, as mentioned, a genetic cure makes it in time. So one ought to be prudent and give our President the time. The integrity will not be questioned one way or the other. Even in the UK the Queen cannot refuse to sign a Parliamentary Bill. But at least there they have the House of Lords which can delay a process and send a Bill back for tweaks, allowing for a democratic process not to be based solely on a majority vote, which reduces ethics to a statistic.

 

Pierre Mallia is Professor of Family Medicine and Patients’ Rights and teaches at the University of Malta. He chairs the Bioethics Research Programme of the Faculty of Medicine and Surgery. He also chairs the Bioethics Consultative Committee.

This article is his personal opinion and does not represent the opinion of any committee or board he serves on.

 

Email: [email protected]

 

 

  • don't miss