Following the publication of an interview with Lawrence Alexander in which he asserts that “we have entered the age of eugenics” (see Press Abstract of September 30, 2014), Gènéthique refers its readers to an interesting article on this subject: a joint interview with two Gènéthique experts, Jacques Testart, Honorary Director of Research at INSERM, and Jean-Marie Le Méné, Chairman of the Lejeune Foundation, The interview was held in 2011 with Marin de Viry of the Revue des Deux Mondes, which published the paper in a dossier, entitled “Bioethics: where do we stand?”
Revue des Deux Mondes wished to interview Jacques Testart and Jean-Marie Le Méné, two undeniable experts on issues in the draft legislation on bioethics. Beyond the differences they highlight in the interview, they have two points in common: firstly, they reject the spirit of scientism, which aims to multiply technical prowess, justifying it too quickly by referring to “progress,” and secondly, they intend to remove the consideration of ethical issues from market pressure. They both agree on the refusal of future legislation that merely organises legal immunity for practices that interest, primarily, a particular category of laboratories, researchers, and clinicians. We thank them for accepting our invitation to debate.
REVUE DES DEUX MONDES — Jacques Testart, Jean-Marie Le Mené, what is your general assessment of the direction of the draft legislation on bioethics that has been submitted to Parliament?
JEAN-MARIE LE MÉNÉ – What strikes me in preparing this third legislation on bioethics, following those of 1994 and 2004, is the emergence of a new state of mind and triumphalism, which characterised the first legislation in particular, is significantly less. Meanwhile, “transgressive practices”, permitted in the first two legislations, have demonstrated their dangerousness or their uselessness. By “transgressive practices” I mean practices that existed before 1994 without any legal framework and therefore with legal uncertainty for those who practised them. Faced with the vertigo that these technical innovations aroused, some have expressed the desire to regulate these practices by legislation, including in vitro fertilisation, embryo storage and selection, judgment criteria for those implanted or not, the decision to destroy embryos, etc. Now, even if they remain questionable ethically, these practices are not “transgressive” in the sense that legislation has authorised and monitors them. Since this framework, derived from other legislation, it is the first time that the issue of eugenics has been questioned clearly because eugenics sometimes underlies these practices. The engagement letter of the Prime Minister to the State Council in 2008, as part of the preparation of the draft legislation on bioethics, calls for clear indications to remove the risk of eugenics from the draft. The head of government is explicitly referred to Article 16-4 of the Civil Code, created by the 1994 Act, which provides that “any eugenic practices in the organisation of the selection of persons is prohibited”.
In addition, a number of actors, politicians, policy makers and others, such as Mr Sicard, Mr Mattei and Mr Nisand, admit the existence of eugenics.
The French situation is schizophrenic and it has to change: penal provisions against eugenics of 20 years in prison exist, but also more and more practices are related to, or are in fact, eugenics. Of course, no one goes to jail, but the contradiction has become unbearable, and the taboo around these practices has begun to burst. Let me be clear: I am not saying that we are in a totalitarian, eugenic State, and besides nobody thinks that, but it is very clear that eugenic practices exist.
The first negative point I have noted on the development of the legislation is on this central question of eugenics. Not much has happened and I see nothing that is intended to defeat eugenic practices. At the highest level of the State, we are beginning to talk about it and worry about it, but without there being any trace in the text of challenging these practices. However, the États généraux de la bioéthique, which should have instigated thought prior to the draft legislation, indeed have underlined these practices. Also, citizen power, along with the États généraux de la bioéthique, launched an interesting approach, estimating that the subject concerned everyone, which is common sense: how we make children, in fact, is an issue that affects everyone. But we did not follow though. The États généraux de la bioéthique, in principle, is revolutionary: it gives power to the people and is not a trivial work process. However, the expectations and concerns of citizens and those of health professionals including midwives, obstetricians and gynaecologists were not taken into account. The pressure exerted on these professionals increases each day, especially to totally eradicate trisomy 21 foetuses, i.e. to achieve a “zero trisomy” standard. This pressure is less accepted and is reflected by low demographics in the maternity medical specialties.
The second negative point is how the issue of embryonic stem cells is treated. On this subject, we have believed all the lies from the beginning. Since 2004, some explained to the legislation makers that if they did not vote for the approvals of research on embryonic stem cells that would heal us all, it would be the death of medicine.
This absurd argument was conveyed by people of all political persuasions. To satisfy this thinking, the bioethics legislation of 2004 created the Biomedicine Agency, a public institution that considers that it can interpret broadly the application of the legislation, and this has allowed virtually all research on embryonic stem cells, regardless of the prohibition, in principle, of such research or the restrictive conditions that had been set up by the legislature. But there is no therapeutic perspective on embryonic stem cells, in particular because we cannot control their development, which leads to cancer! Everyone knows that. And everyone also knows we can do better with non-embryonic stem cells (responsible for the only successes in cell therapy), and somatic cells reprogrammed into stem cells (iPS) if simply to model diseases.
I still see some positive points. The first is the approach. With the États généraux de la bioéthique, we stepped out of the circle of experts to hear the citizens’ thoughts. Certainly, the process “stalled” at the end, but we hail the intention and the launch of such an approach.
The second positive point is that we have slightly improved the information given to pregnant women during prenatal diagnosis. Informing them properly on the reasons and possible consequences of a subsequent medical procedure is the least we can do. However, all studies show that when the prenatal diagnosis process begins, women do not understand what they are entering into. And this will lead in the vast majority of cases to termination of their pregnancy if the diagnosis reveals the identification of a disease.
The third positive point is to have waived the systematic introduction of the search for trisomy 21 during pre-implantation genetic diagnosis, even although we need to see what the commission review presents to Parliament. This systematic search was an idea that germinated in the mind of one or two members of the National Ethics Advisory Committee, but that is all: no-one asked them to do so. It does not mean anything, because the goal of pre-implantation genetic diagnosis, although it is questionable ethically, is understandable: people who have two or three children with a certain genetic disease do not want to conceive another one with the same disability. Telling these couples: “we will also test for trisomy 21” as a sort of “bonus” is nonsense because they have no particular risk of having a disabled child: indeed, trisomy 21 is not a hereditary disease, but a genetic one. Screening for trisomy 21 during pre-implantation genetic diagnosis introduces non-biological criteria, and also social issues: these children are more difficult to raise, less efficient and less rewarding than “normal” children. It is presumed that parents with a hereditary disease do not want a child with trisomy 21. When we start getting into this, there is no end!
How far should we expand the list of potentially unwanted beings? The government finally removed this provision from legislation, which was introduced by Jean Leonetti, an idea of the National Ethics Advisory Committee. And just as well.
Finally, I have noted that the National Consultative Ethics Committee is dead, or dying. In early December, it rendered an unreadable recommendation, No. 112. This is not a recommendation, however, as it contains no proposals. There are 11 dissidents of the issued recommendation, or rather the lack of recommendation, which are distinguished as dissidents … Why not, after all? But to add to the confusion, these dissidents still support the committee’s opinion! Aside from Marie-Thérèse Hermange, who has the logic to be truly dissent, 40 people supposedly able to think for themselves, supported a document that mocks its readers: journalists, parliamentarians, and the government and public opinion.
JACQUES TESTART – I agree with this point, which I will develop using other angles. I think overall we are moving towards “trivial ethics,” an ethic of purpose, which always uses the keywords of philosophical vocabulary, but basically as a screen to hide the actual practices. I will explain this point, but let us first say that the National Consultative Ethics Committee was a remarkable, unique institution in the world with a commitment to the analysis and explanation of the issues, and it is degenerating. This may be because the government has the will to make it disappear, and it seems to me that is what is happening.
An illustration of this degeneration is its reasoning behind the search for trisomy 21 during pre-implantation genetic diagnosis. The reasoning is as follows: since the embryo is there, it would be foolish to look for one condition, but not another? Why wait until the embryo is implanted? We can name this reasoning to fix things as opportunistic ethics. We expected better of the National Ethics Advisory Committee. The worst thing is that these ethics seem coherent; the sequence makes perfect sense. But it can also justify doing whatever it wants. This proposal – fortunately abandoned – reminded me of the first bioethics problem that arose in the 70s: the sperm donor. At that time, professionals made their own rules, which are still in force, although there are plans to change them on the specific issue of donor anonymity. In particular, they made the “reproductive pairs” rule – the vocabulary is important.
Specifically, we did a survey – documentary at the time – on the various possible pathologies in the donor’s family. When a hereditary risk was revealed in a family, and if the donor was selected for his sperm quality, it was kept for a woman who would not have the same risk factors in her family. It was an implacable logic: we do not want to combine risk factors. I want to say that the patients had not asked for this and they were not informed of this selection that we practiced. This “opportunistic ethics” already existed in the 70s, which covered eugenic practices, emanating professionals and not the people who sought medical assistance.
REVUE DES DEUX MONDES – But how does one reconcile technical possibilities and ethics on this issue of the unborn child’s “characteristics”?
JACQUES TESTART – It is easy, just refer to what happens in society. A man falls in love with a woman: he does not ask her pedigree when they form a couple. He does not talk about the “reproductive pair” using this vocabulary from the veterinary world, when they made a baby! In 1986, I said that I would continue to help infertile couples to make babies randomly, the same babies they would have made in their bed. Knowing that human selection has become possible with arrival of embryo analysis four years later, I refuse to use these techniques for the purposes of selection. You know, people who have a sterility problem ask for a very simple service. In the case of insemination, people come because the man is sterile. They want a child, they do not ask for more. They do not want a child like this or like that. Embryos are selected without them asking, so of course, when they have a greater risk of having a child affected by a “particularly” serious and incurable disease, pre-implantation genetic diagnosis is used. But this is no reason to extend the scope of the investigation, and therefore the possible selection beyond what people want, especially since this extension option provides an incentive for people to formulate new demands.
The Biomedicine Agency is a structure that, in its department, medically assisted procreation is completely dominated by CECOS practitioners (centres for the study and the preservation of eggs and sperm), even those who invented the “reproductive pairs”. For everything about assisted reproduction, there is a lobby of technicians who have managed to accommodate bioethics, imposing their own rules. And in general, the pressures on those who are responsible for developing ethical rules are intolerable. We clearly see the lobbies that act when interest is at stake, and leave ethical reflection to develop when there is little or none. For example, concerning gestational surrogacy, there is no real industrial interest; here, we can see that there are real ethical doubts and the debate is open. But stem cells, where the interest is mainly because of the large number of patents that are expected, where time and “production” count, as if by magic we see an area of unanimous ethics. All government agencies and all experts agree: we must develop research on embryonic stem cells for human progress, to heal the sick, etc. Think wisely, deliberately: this is possible if there are no financial and industrial issues behind it. In the case of stem cells, we have profit corporations formed by scientists who want legislation to be supple about the range of possible practices.
You spoke quite positively, Jean-Marie Le Méné, about the États généraux de la bioéthique website. I would be a little less optimistic than you. As part of the Citizen Science Foundation association, I struggle to democratise science, and I see that anywhere, on any subject, from nuclear to bioethics, power leads to setting up all kinds of so-called “participatory” procedures that have a democratic appearance, a citizenship base. But in reality, things are organised apart and often even before the civic discussions take place. I witnessed this for pre-implantation genetic diagnosis; I was an expert in the citizens’ conference, and I worked with a “citizens’” group whose conclusions were not retained because they asked for restrictions on the use of the technique.
JEAN-MARIE LE MÉNÉ – It is true that the process was not consistent with the original intent that was displayed. For example, people who advocated moderation and wisdom on eugenic practices, with a non-transgressive tone, sent a large number of spontaneous contributions to the États généraux de la bioéthique website. Those who had other views are not expressed. The government and parliament considered that since this “non-transgressive” view was the only one to appear on the website, it should not be taken into account.
And also, the day of conclusion of the general assembly by Mrs Bachelot, which pointed out a certain desire to challenge eugenic practices, the minister signed two decrees strengthening screening for trisomy 21: these decrees put in place more and earlier screening. It should be mentioned here that this screening is for a captive market and renewable indefinitely (more than 800,000 pregnant women per year).
JACQUES TESTART – A major phenomenon for me in the way we think about bioethical issues is the refusal of predication. There are things for which we see clearly what they are preparing, but as they are not on the market (I use the word deliberately), we do not think about them; it is as if they do not exist. For pre-implantation genetic diagnosis, dramatic changes are possible, and very likely (I will come back to them), but we do not talk about them.
Lack of ambition is obvious. We had a good ethics committee that we have allowed to degenerate and limit in the organisation of “public debate” without real consequences while the Biomedicine Agency, dominated by practitioners, obtains more and more power. Moreover, we have no desire to think on the European level. However, if neighbouring countries, such as England, does whatever it wants in terms of eugenics, we will do whatever we want because this area, downward adjustment prevails, the most permissive countries are supposedly more “progressive”. We can already see the development of “reproductive tourism”. We know that a purely national system of ethics is not viable. What is being done to internationalise thinking and therefore the future common rule? Nothing.
I have the general impression that we ignore problems that are known to occur, which means that if the lobbies of practitioners, and very permissive ideological lobbies play well, they obtain the result they want. When new predictable techniques surface, and therefore new possible problems from today, we still say “science has gone faster than ethics!”
JEAN-MARIE LE MÉNÉ – Yes, I also see that it is difficult to attract the interest of parliamentarians on the subject because they feel that it is played out.
JACQUES TESTART – Beyond the leaders, I have also observed weariness amongst the public at my conferences. Twenty years ago at the start of pre-implantation genetic diagnosis for example, people thanked me for the prevention of possible abuse. Now they tell me that if couples want to have babies with a certain characteristic, it concerns them. They ask me what I am involved in, who do I think I am? I am treated like a traitor. On ethical issues, the substance of the opinion wears thin and accomplishments are accepted. The idea of reproductive cloning will eventually resurface; moreover, the vice-president of the International Bioethics Committee, a doctor, said a few years ago that as long as the procedure is under medical supervision, why not…? Gradually, we detach from the ethical foundation initially set down.
REVUE DES DEUX MONDES – But what produces this change in opinion and responsibility? It is a matter of indifference to human life?
JACQUES TESTART – No, we accustom ourselves or resign ourselves to the idea that our future is bound by techniques (this is the foundation of progress ideology). And they always find ways to repair their mistakes. As well, there is no drama, I mean, we do not see ugly, shocking scenes, such as people herded into camps, and so where is the problem? This is the main line of thought: erosion of interest in these issues where resignation replaces indignation.
JEAN-MARIE LE MÉNÉ – The idea that technology is the key to happiness is indeed progressing. This goes along with the loss of humanistic culture. I hear people who are apparently educated say, “we still have the right to choose a child who does not have this or that disease”. The loss of humanistic culture that underpins this discourse is, unfortunately, fairly widespread.
JACQUES TESTART – There is also now a shared idea that the embryo is not a person, so technologies that relate to embryonic stages do not concern people. Yet, the embryo is a human. We all come from embryos, it is indisputable. Amongst assisted reproduction practitioners, I am alone to say that the embryo is a human being. For most others, it is a bunch of cells. But when I say an embryo is what we were all at the beginning, no-one can contradict me. We did not come from a chick or mouse egg! Hence, in addition to the due respect to the only being capable of becoming a person, lies the importance of concern for the consequences for people of what we do to the embryo.
JEAN-MARIE LE MÉNÉ – Professor Jouannet, Chairman of CECOS (centres for the study and the preservation of eggs and sperm), said on this important issue: “The embryo changes in nature because it is inextricably linked to the reasons why it was created. When those reasons no longer exist, it becomes something else, so I believe that the embryo does not exist in itself, but in terms of why it was created”. The speech is scientifically revisionist in that it denies the observable reality. And “I believe” underlines a religious sense! It is an attack on secularism because it encourages us to “believe” him. In fact, the embryo exists, scientifically. And even if we cannot prove it is a person, it is a human being, without question. It is difficult to imagine human beings who are not people (only slaves and prisoners have undergone this dubious distinction). It is not a matter of opinion: what is, is. I see nothing that can afford to say that the embryo “changes in nature” based on external “reasons”.
JACQUES TESTART – Yes, I agree, that false speech also founded the idea of the “parental project”. If I say “a cow embryo is a bovine”, I will shock no-one. But if I say a “human embryo is a human”, that shocks. The English invention especially by Edwards of the “pre-embryo” is an intellectual construct to allow experimentation.
Moreover, the same Edwards does not write that the three-day mouse embryos on which he works are pre-embryos! He speaks of embryos. This notion of the pre-embryo is a construction of opportunistic ethics, and this is demonstrated by the fact that pre-embryos are only found for humans whereas the same stages of embryogenesis are shared by all mammals!
REVUE DES DEUX MONDES – Let us discuss prenatal diagnosis: what is the risk of potential eugenic drift in the implementation of this technique?
JACQUES TESTART – Prenatal diagnosis certainly opens up to eugenic practices, but they are relative and limited. I mean that if it leads to abortion, pain and suffering are always caused, so we cannot turn to eugenics as easily as with other techniques that we discuss. Of course, an extreme case where abortion was invoked by the revelation of the absence of a child’s finger has been recorded, but such cases are very rare, and I do not think they intend to increase. What limits eugenics for the medical termination of pregnancy is that the decision is very painful, and it belongs to the couple, while with pre-implantation genetic diagnosis, the decision is made by geneticists. It is very different. For me, prenatal diagnosis is not a major problem because if we cannot escape pain, we remain human. When I say that, some feminists come at me, but with pre-implantation genetic diagnosis in hand, when you have 15 embryos of a 10th of a millimetre in culture dishes, and you are told “we advise the embryo with label b”, it is not at all the same issue or the same circumstances, and suffering through having to choose does not exist; there is only reasonable efficiency… which is limitless.
JEAN-MARIE LE MÉNÉ – I have a more critical and more severe position than that of Jacques Testart. I remind you that France is not a totalitarian country in the hands of eugenic doctors. But clearly, trisomy 21 is a major pathology and things go too far in practice. The 1994 Act described a great principle: the prohibition of eugenic practices designed to organise the selection of people.
Very stringent penal provisions followed. But two years later, Mr Mattei laid the foundation for systematic screening for trisomy 21 in all pregnant women, and not only amongst women at risk. The ethical argument of those in favour of the universal screening is to emphasise that women have the freedom to choose not to abort. I disagree with this point of view because if women are free to choose to abort or not, the system creates a demand, determines it and forces it almost. Thereupon, the objection is raised that routine screening is not State eugenics since the individual is free to choose. I think the opposite: it is a provision of the collective spirit in the case of health insurance and the State that induces individual practices. The objection is raised again that it is the families are eugenicists who want the perfect baby, but not the State. This is an intentional process allowing public authorities to wash their hands. However, people who want to have a child do not necessarily think of Apollo Belvedere or Venus rising from the sea, or their doctors. What I see, however, is that health insurance provides 100 million euros (provided by the Court of Auditors in 2003!) for screening, which is not coercive, but extremely prescriber. At the first ultrasound, we propose reimbursement of the test serum markers. “Will we do it or not?” wonder couples.
The doctor usually draws them an apocalyptic picture of a child with Down syndrome that bears no relation to reality. When the results confirm the diagnosis of Down syndrome, 96 % of screened foetuses are aborted by medical termination of pregnancy. The prescriber effect is massive, as massive as the coercion. Indeed, how could it be more? This figure poses a significant problem not only ethically: an entire population is removed making a disease lethal, which it is not and which is becoming less so since there is progress in social and medical care and, ultimately, hope of healing brought by the Jerome Lejeune-Foundation. It seems to me that if the choice to abort is 50 % of screened cases, I would draw the conclusion that choice really exists, but 96 % is a popular democracy score. And then, when you look at the intellectual foundations of screening, they are very serious. The criteria developed are an aversion to mental disability, the availability of techniques (we can screen, so screen) and the social cost. Where is the ethics in this tripod? In fact, prenatal diagnosis was calculated based on the social cost of trisomy. It is true that the cost of screening and abortion is less than the cost of living of a person with trisomy 21, but should we study cost? This method is unacceptable.
To clarify, the tunnel in which women are put is as follows: initially, the pregnant woman is proposed serum markers that indicate a probability of having a child with Down syndrome. In case of a statistical risk, performing an amniocentesis is proposed, which will make the diagnosis. It comes with a risk of about 1 % of foetal loss. This risk was justified in the following manner by the High Committee on Public Health in 1994: “If we grant the loss of a healthy foetus a value equivalent to avoiding a case of trisomy 21, the result of the cost-benefit analysis is reversed”. This is going too far! In this logic, the “good practice” of eliminating a foetus with Down syndrome justifies the risk of accidentally destroying a healthy foetus (actually, it eliminates two healthy foetuses for one foetus with Down syndrome)!
If amniocentesis detects a child with Down syndrome, health professionals now consider the logical solution is abortion. They do not understand why a pregnant woman would hesitate. Why did she go so far if she is to give up? And we allow less time for a woman to make a decision whether or not to keep her child: this shortening of the decision time is also politically deliberate in that the idea – unverified – is that the faster the decision is made, the lesser suffering is endured.
I will go further. In our Penal Code, Article 211-1 defines and punishes genocide following the United Nations. France even toughed the UN text when it introduced the punishment of genocide by law. Genocide is determined by three criteria: 1) victims must belong to a group, which can be determined by any arbitrary criterion in French legislation: the genome is one; 2) it must affect the lives of this group as long as they belong to it; 3) there must be a concerted plan, i.e. organised will. If we consider the voluminous documentation of the High Authority of Health on the subject, which is entitled “Strategies (plural) of trisomy 21 screening” and 100 million euros in annual funding, the question does not even arise. I find that I am no longer the only one to use the term “genocidal strategy”.
JACQUES TESTART – The 1994 legislation forbids organising the selection of people. What is striking is that the limits of the legislation are filled with utter confusion: an embryo, of course, is not a person, but everyone knows that it can become one, and organised embryo selection means selecting people.
JEAN-MARIE LE MÉNÉ – A legislator’s passing remark: in civil legislation the person begins at birth. Alongside this legal personality that exists for successions, commercial transactions, etc., criminal legislation considers that because the foetus has no legal personality, it is not a person. Indeed, the Criminal Code has long protected the foetus in the womb of the mother, and punished those who harm the unborn child without calling abortion into question. The concept of a person in the criminal sense is broader than in the civil sense. It is true that we have witnessed the unbelievable questioning of manslaughter of the foetus by the Court of Cassation, as if the loss of the unborn child suffered by the mother (for example, by being run over by a drunk driver) is void on the grounds that the foetus does not have legal personality. But legislation can evolve.
JACQUES TESTART – Legislation not only protects people: for example animals are subject to protective covenants and I think inoperative bioethics build on these definitions rather than on content. It is also the issue of the “protection of persons” that brought fear to abortion supporters as these criminal provisions undermine the right to abortion. There are sides that have been built based on positions on abortion. This greatly obscures the debate.
Amongst abortion supporters, some recognise the foetus as a person of which we would have the right to dispose in some cases. It is always uncomfortable because obviously nobody wants to kill a foetus. This is where the concept of the “lesser evil” intervenes. Eliminating a person would be a lesser evil than the fact to let him live in poor conditions for himself and his entourage.
REVUE DES DEUX MONDES – Pre-implantation genetic diagnosis increases the risk of favouring antenatal elimination rather than disease research: detecting disease and eliminating an embryo is less expensive than doing research. Does this temptation seem strong to you?
JACQUES TESTART – The temptation to remove the embryo before implantation in a woman’s womb is strong. You can see the current direction of the ethics committee: to privilege disposal outside of the body to avoid the trauma of abortion.
In medical terms, it must be said, unfortunately, we do not know how to treat genetic diseases. We manage by cellular therapies to treat or even cure hereditary blood diseases. These are the only successes of so-called “gene” therapies (in fact, genetically corrected stem cells are reintroduced into the body). I am not very optimistic regarding trisomy 21 because as signs of the pathology are in every cell of the body, all you can hope for is to diminish the consequences, but you cannot cure the genome itself. You can never, I believe, bring normality to the child, but you can avoid disability. Our gene therapeutic capabilities are very low, almost non-existent, which leads, of course, to eliminate disease-carrying embryos: it is quite clear. Because, unlike therapeutic impotence, almost complete description of the genome has made tremendous progress unlike pre-implantation genetic diagnosis, which has a long way to go: it will be economically efficient, and its indications will continue to expand beyond the rules that apply to prenatal diagnosis, of course. Pre-implantation genetic diagnosis is a consensual promise of discreet eugenics, and on a large scale. I was talking with Israël Nisand to whom I said that gynaecologists are trained in a system that promotes eugenic practices. He replied that the Nazis were eugenicists and as we are not Nazis, we are not eugenicists.
The syllogism is surprising, but very common in the minds of professionals. Well, let us see things concretely. In England, you can make a pre-implantation genetic diagnosis to prevent a child being cross-eyed: strabismus is linked to a gene and we can identify which gene to eliminate in the embryo. We have gone too far in the use of pre-implantation genetic diagnosis in this case, and here, I think we are talking about eugenics, right?
In France, it is not the same as in England, because no list of conditions exist that allow elimination of embryos. Our ethics refuse it. But in reports of the Biomedicine Agency, about 60 diseases are identified by pre-implantation genetic diagnosis. The practice is the same, with or without a list (the British list comprises about 65 diseases).
For the future, I believe that the use of pre-implantation genetic diagnosis will expand very abruptly when we mass produce embryos, i.e. mass eggs (sperm having a small role in this whole affair). At this point, everything will change. In particular, these techniques will also help to avoid the current issues of in vitro fertilisation. Let me explain: research is being conducted by veterinary research laboratories. Small pieces of the ovary wall are taken where there is a stock of oocytes capable of giving eggs in the ratio of 1 to 10,000. We are looking for the means of in vitro culture to increase this yield, for example, to one egg for 100 oocytes. When we can achieve this, we can make 100 eggs, and thus embryos, per woman with limited interventions because it only requires only one simple ovarian biopsy (immature oocytes are easy to freeze), without ever having injections, hormone treatments, ultrasounds, etc. that are required by in vitro fertilisation. In this future situation, we do not see why people would refuse the benefit of screening embryos to have a “normal” baby. Almost the entire genome will be analysed in an embryonic cell, which we can do efficiently. The challenge is the production of eggs from the oocytes: the day when it will be quantitatively successful, the practice of pre-implantation genetic diagnosis will explode, and with it, eugenic practices.
I talked about this to Mr Leonetti, who is very involved in the revision of bioethics legislations, and he told me that I was right, but we could do nothing as the technique was not available. This is the problem: ethics is lazy. It expects science to produce. I think on the contrary, it should be anticipated.
In my case, I held a clear position: enough said about prenatal diagnosis because it avoids the worst, in particular serious and incurable disease, without having to define more. While pre-implantation genetic diagnosis is a technique to achieve the best baby possible, it involves selection and so we come back to eugenics. But since it is already practised, backtracking is impossible. I support screening for a single disease in the context of pre-implantation genetic diagnosis because we can limit only the number of pathologies sought, not their nature whose “seriousness” is perceived differently from one person to another. What seems serious is the multiplication of the selection criteria on the embryo and, ultimately, their addition.
JEAN-MARIE LE MÉNÉ – I strongly agree. I would add that the ideology underlying all this evolution is liberalism, which is expressed in a very festive and media-centred way by the Telethon.
JACQUES TESTART – You realize that this year in front of the cameras, they gave to two children with myopathy a purebred cat, a selected product… It was a pretty obscene symbol.
JEAN-MARIE LE MÉNÉ – We thank you as you were the first to denounce their lack of thought.
JACQUES TESTART – There is also the terrible story of the “babythons”. Ten years ago, they brought “babythons” onto the set, i.e. children in excellent health born to parents who had a high risk of myopathy. They explained to viewers through their donations, they battled against the disease. In fact, these children are healthy because we selected the embryos of their parents. This is not a victory over the disease; it is a victory of selection. Their “treatment” is to cancel life. The “babythons” mask therapeutic failure.
On examining legislation, the draft legislation does not change anything in the practice of pre-implantation genetic diagnosis. The point that worries me for the immediate future, as well as what I said about the prospects for mass embryo production, is widening of the criteria for pre-implantation genetic predisposition diagnosis. A step which will be taken is that acquired pathology will no longer be screened, but a predisposition gene will be, i.e. a gene that introduces a risk factor, which increases the probability of occurrence of disease. Clearly, France does not authorise this type of research, but it occurs. For example, for the risk of cancer, the Biomedicine Agency regulates such practices. At this time, we can talk about the prevention of the “risk of risk”. The shift towards more eugenics is undeniable. Finally, I worry about one criterion: that of “particularly serious and incurable disease”. Can we include haemophilia in this definition? In my opinion, no because we can live a long and active life with haemophilia.
JEAN-MARIE LE MÉNÉ – One day, perhaps France could be condemned by the European Court of Human Rights because it will not have everything in place to detect a particular disease.
JACQUES TESTART – Yes, and you have to fight against that. A rule should be made that doctors should not set out to produce only normal children. This is what should be brought to the European level. The Spaniards, with their 1988 Act, require doctors to use every means possible to avoid any disease in the child. This is unacceptable unless you want to encourage selection. If we do not act at the European level to align the rules, “our” pre-implantation genetic diagnosis on common legislation will be on the most liberal basis, as always.
REVUE DES DEUX MONDES – If the principle of embryo research prohibition is maintained in legislation, but derogations are relaxed (and therefore the scope of the extended research de facto), what safeguards would you like to see implemented?
JEAN-MARIE LE MÉNÉ – Before talking about safeguards, the question begs as to whether embryo research should take place. In reality, the problem is ill-posed because “embryo research” does not mean anything. However, stem cell research means something.
JACQUES TESTART – Yes, in terms of scientific method, instead of going directly to human embryonic cells, two preliminary steps should be achieved, firstly on animals – research on animals is normal pathway of medical research – and secondly on non-embryonic cells. We are working to the embryo prematurely because we esteem that there may be patents to file at the end, but in reality the necessity of human embryonic stem cells has not been shown.
JEAN-MARIE LE MÉNÉ – Nevertheless, Shinya Yamanaka has made possible the process of reprogramming human cells into embryonic stem cells. Legislature cannot ignore this breakthrough, which eliminates the need for embryo manipulation.
JACQUES TESTART – Yes. Delusional promises about embryonic cell research must be brought to light. We hear any old thing: the prospect of healing burns, for example. All these promises seem to endorse particularly the appropriation of the embryo by biomedicine.
REVUE DES DEUX MONDES – To conclude, we can ask ourselves about two criteria: the “parental project”, where some are the only sources of respect for the human embryo (see in particular the findings of the États généraux de la bioéthique); and the “lesser evil”, which permits “ethical compromise”.
How do you analyse these mid-ethical, mid-political criteria (because they determine the course of action and the ethics, because they challenge the principles or at least a general rule)?
JACQUES TESTART – There is no need to prove the existence of the embryo by an external perspective that would give it a reality. The concept of the “parental project”, and also that of the “desire for children” deny in sympathetic terms this objective existence. The notion of the pragmatic “lesser evil” tries to find the least violent practice when faced with a painful choice. This attitude seems to me to reveal ethics as the proposed “lesser evil” with no objection to the intangible principles.
JEAN-MARIE LE MÉNÉ – I have no preconception about the embryo; I mean, I do not have a “transcendental” definition of its nature. However, I recognise it as already a human being, a fellow, a peer if you want. The objective nature of belonging to the category of human beings need not be proven or validated by a parental project: an embryo must be respected as a human being. Validation of its existence by a “parental project” is a mental construction to facilitate its ownership, exploitation and destruction by scientism and the market.
JACQUES TESTART – In any discussion on the embryo, the issue of abortion obscures the problem. For me, it can be discussed independently of the issue of embryo research or status because the issue is not the same: the challenge for the embryo is eugenics. While abortion is not a eugenic practice, it is the difference between “I do not want children”, which leads to abortion, and “I do not want this one”, which leads to the medical termination of pregnancy or embryo selection and, yes, this is eugenics. The “competitive liberal” atmosphere aims to produce efficient beings and finally to organise an artificial evolution based on the principles discovered by Darwin: first create variety in the species (multiplication of embryos) and then select (pre-implantation genetic diagnosis), which could also eventually cause problems to the species… but that is another debate.
■ Jacques Testart is a biologist and agronomist. He has conducted extensive research on animal and human reproduction and is a pioneer of human in vitro fertilisation (Amandine, 1982) before refusing to contribute to embryo selection (pre-implantation genetic diagnosis). Pondering the evolution of the researcher and technoscience in a society dominated by competition and the market, he declares to be a “science critic” and chairs the citizen science Foundation. More information is available on his website: JacquesTestart.free.fr. Latest book: Labo planète ou comment 2030 se prépare sans les citoyens, with Agnès Sinaï and Catherine Bourgain (Mille et une nuits).
■ Jean-Marie Le Méné is Chairman of the Jerome Lejeune-Foundation. First financier in France of therapeutic research on trisomy 21, the foundation also develops specialised medical consultation for over 5,000 patients. In addition to research on intelligence diseases of genetic origin, he also finances work on cell therapy. Judge of the Court of Auditors, Jean-Marie Le Méné is the author of La trisomie est une tragédie grecque and Nascituri te salutant ! La crise de conscience bioéthique (Salvator, 2009).
