Having been chair of the Bioethics Consultative Committee, and awaiting the nomination of the new, my position was always to be on a neutral side of things in order to be able to evaluate, without emotion (as ethics is not only a feeling), both sides of the argument. Being Chair however, albeit a political appointment, does not mean that one always has to agree with what is being said and done.
When it came to embryo freezing I understood the impact of the situation and since freezing is not killing (that is why we freeze), unless of course one freezes indiscriminately, then it is feasible and then my advice was not to freeze eight but to go down to five – a number which has much better chances of being used by the couple. However, one of my main objectives was to promote public debate and dialogue, an issue which has been elaborated upon by the Council of Europe and indeed supported by the EU, European Group on Ethics, of which I am a member. The idea is that ethical choice in government cannot be based on feeling, and worse still, on majorities. There must be a dialogue and debate to avoid polarized powers, be they ultraconservative or ultra-liberal, which groups usually have all the money and power to influence referenda. Rather, people ought to base their choices at least on a modicum of understanding and on reason.
This is the main idea behind a document which the Bioethics Consultative Committee compiled, which was not made public in deference to the last elections, when euthanasia was being hotly debated and which the media was clearly showing that all was being based on emotive positions. People simply did not know all the facts – that people have a right to refuse treatment; that they cannot be treated without their consent; that their lives need not be prolonged by technology; that pain is never an option and no one should die in agony – even if it means shortening their lives by a few days. This was reflected in the university survey in which 85% of respondents, including most of those who opted for euthanasia, still said they required further information.
The same is again not happening for Pe-Natal Diagnosis (PND). At one stage before the elections I got invited for a dialogue at the Labour Party headquarters for a debate on reproductive technology. This was the only time, as far as I know, that this issue was mentioned. There were around 50 to 60 people. Genetic selection, surrogacy and issue were on the agenda but not discussed in detail due to lack of time. No presentation of the facts involved were mentioned. Afterwards I spoke to one of the attendees who agreed with embryo selection; she did not agree with discarding those embryos or what to do with them. This left her in a quandary, and yet, she agreed! There was little time for people to express their views. There are usually two hours for these events.
I expressed the notion that in bioethics one cannot rush and even more cannot impose on people. That is not the idea of power. But there seemed to be the notion that the Nisa Laburisti wanted to push through a number of issues. This is fine as a start but one cannot not listen to other people’s values and ideas (OPV – as the late Edward Debono called it). I was attacked by the president that the Party has a record of moving swift and fast. This was true – but for matters which were important and which gave rights to LGBT, civil unions, etc. Other issues, which are not basic human rights, need consultation with the public. They have a right to inhouse discussions but imposing questionable moral technologies on a nation is quite another thing.
While selective discard can be done at the beginning of fertilization with Polar Body Biopsy, when you have the genetic material of the male and female not yet fused (both encased in a shell called the pro-nucleus). The new genome is not yet formed as fertilization is not yet complete. This is less a threat to the many in society who uphold the moral value of the embryo and hence to selective discard of embryos who tested positive for the gene.
Mind you, these embryos are not merely morulae (a collection of dividing cells). They usually are at the stage of blastocysts – in which cells form a sphere with fluid inside, at one pole of which there is the inner cell mass which is the true beginning on the embryo and constitutes 20% of the cells. The rest of the sphere goes to form the placenta and it is from this that the cells for testing are taken. Hence the test does not harm the embryo. But if it is positive, the proposal is to freeze it, discarding it for the “healthier” embryos.
The problem is that we freeze in order not to kill the embryo with the strong hope that they will be used in the future by the parents or by adoption. It is highly unlikely, however, that embryos discarded for a disability will be adopted. Keeping embryos frozen indefinitely was not the inherent intention of freezing. In effect the embryo is discarded.
The prospective parents have to realise that they are not giving a chance to one of their potential children because it is disabled. These people have meaningful lives and while we do not wish to have disabled kids, we still cherish them when they are our own. We take the risk. It is a matter of chance-or-choice; a choice which means distinguishing between your children and this, as the Nuffield Council points out, can have existential issues with any other “healthy” future children. Parents might also have higher expectations for the sacrifice they made. Moreover, it does not mean that these children are not susceptible to all the other things and diseases we are all subject to.
That having been said, discrimination against disability does not mean that we do not cure it if we can – which genome editing is all about and which the Nuffield Council, the most authoritative Bioethics Council in the world, estimates will be available within 10 to 15 years. It has worked on animals.
The Nuffield Council on Bioethics is the UK’s closest thing to a national bioethics committee, which it does not have in order to have a neutral body funded by a trust. In its long report on Genome editing and Human reproduction, it discusses all options available for people not wishing to have children with a genetic disorder running through their family. This is selective abortion, selective discard of fertilized cells tested for the gene (for which the couples have to use IVF), and finally gene therapy. While it does not speak against any of these issues it does point out a number of points which have a toil on people. Technology is shaping our world and certainly is having an impact on social norms and values. The responsibility of a democratic government is to provide a public policy which respects moral norms and which is in the public’s interest and morality. This can only be done by engaging the public in debate and dialogue and not merely through political policies or conferences organised by powerful liberal or conservative views. The report clearly leans to this near technology.
Thus, genome editing is a real possibility and CRISPR, a method which has the ability to remove a defective gene and replace it with the proper gene. This has worked on animals and studies promise a bright future. Of course, our main concern is that these technological advances are used for possibilities other than that for which they were created for. This has happened with IVF and it can happen with genome editing, where people can seek enhancement. Even if countries block these procedures, we will learn about them through media and other means. Nevertheless, democracy is something which remains valid on single societies and nothing ought to be imposed, unless it is strongly felt that it is a matter of human rights (for example LGBT, but not necessarily for abortion without constraints). Even if Malta feels alone in certain respects, one can rest assured that these issues preoccupy many countries and nothing gives any government the right to impose on its people a technology which has moral circumstance bound to it merely because the Party involved want to bring it in. They can only do so with proper evaluation. One thing, for example, is discarding embryos which will develop very severe abnormalities such as babies without brain (anencephy); it is quite another to eliminate one with Huntington’s, who usually have perfectly normal lives and may not necessarily get the condition. The fear of getting a cold does not preclude us from going out unless there is a pandemic. The fear of having a child with Huntington’s should not preclude us from not allowing that child to have the same chance to be conceived as its siblings. “Choice” gives you more moral responsibility than “chance”, which in turn can have consequences on the child among the selected to be born. The knowledge that my characteristics or choice to live has been determined prenatally by another can have enormous impact on self-identity and indeed, when this becomes common, on creation of new enhanced groups. Will the Olympics see this as fair, for example?
As stated in the report: “Beyond the scope and the usual preoccupations of regulation lie broader questions about the relationship between technologies and conditions of life in which people find themselves in contemporary societies. These are questions about public policy, the object of which, at the most general level, is to use the mechanisms of government to bring about the desirable states of affairs for a given society and to avert states of affairs that are considered undesirable.”
When a Party wins with a deservedly overwhelming majority, given the state of the other Party, one has a moral obligation not to take for granted something which was mentioned before the election without proper education and public debate of what values this will impinge upon. Slippery slopes are a reality, as seen with IVF, and we may soon find ourselves selecting those, or genetically enhancing, embryos to the satisfaction of the parents. This is avoided by the government seeing itself as the father of a nation and not of a group that helped elect it. Public policy needs debate; without which there may likely be a change in direction by a different government.
While brute force can give you power, it is respect and dialogue that gives you authority. I trust our Prime Minister and Deputy Prime Minister will take the latter road. No bioethicist worth his or her salt would suggest another route. It is a minimum to ask. What values does Malta need to preserve? Or is it simply that we follow what others are doing?
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 chaired 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 protected]