A “drug baby”. While a first amendment, passed at first reading in autumn 2019, aimed to put an end to this technique considered controversial, a second amendment, voted in a special bioethics committee at the end of June, aims on the contrary to maintain it, and even to facilitate its access. It must be debated in the coming days at second reading in the National Assembly.
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Inscribed in the bioethics law of August 6, 2004 on an experimental basis, this controversial device led, in 2011, to the birth of the first “drug baby” or “double hope baby”. To access this technique, a number of criteria must be met, including "the incurable nature of the disease leading to death (of the child) from the first years of life" . The scientific name of this technique is “preimplantation dual diagnosis with HLA typing”, or “DPI-HLA”. But what is it exactly?
A baby to save his eldest
Parents who have had a first child with a rare disease, often a blood disease like beta-thalassemia, decide to conceive another child and ask to be accompanied by doctors in two objectives. The first is to prevent this child from suffering from the same genetic disease as the older one. The second goes further: making sure that this child is a compatible donor to help care for his sick big brother or sister. The couple therefore resorted to in vitro fertilization (IVF), along with a double preimplantation diagnosis. During the first diagnosis, only embryos free from the desired disease are selected. During the second diagnosis, among the uninjured embryos, only those or the one that would be HLA compatible - that is to say with an immune system compatible with the sick elder - are selected. When the baby is born, doctors can then collect blood from the baby's umbilical cord, which is rich in stem cells. These stem cells will then be kept for a subsequent transplant to the sick elder.
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This is what happened a few months after the birth of the first baby "double hope" in France, baptized Umut-Talha - "our hope", in Turkish. Through the cells of his umbilical cord, this baby was able to save his sister Asya, who has severe beta-thalassemia.
A controversial practice
Despite this initial success, the practice continued to cause controversy in France, for several reasons. First of all, it supposes a double sorting of embryos, and above all, of eliminating many healthy embryos, not carrying the desired genetic disease, with the sole aim of selecting those comprising an immune system (HLA) compatible with the older brother or sister. For those who consider that an embryo is already human life, this poses serious ethical problems.
Then, this technique could assume that parents decide to conceive a child only with the objective of curing their eldest child, that is to say as a means and not an end in itself. "The child is not welcomed for what he is, he is already a project with genetic criteria" , worries Blanche Streb, doctor of pharmacy and author of the book Bébé sur mesure (Artège, 2018).
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This technique had not been practiced at all since 2014, in particular because of the progress made at the level of public umbilical cord stem cell banks, as Professor René Frydman explains to Le Figaro : “When we started to offer and then to obtain the birth of the first double hope baby in France, it is because we did not have enough cord reserves in the banks. But since then, the cord blood donation has been organized. There are even international links between several banks. It is therefore becoming almost exceptional today that we need to consider the child of the double hope: we have had enough stocks of HLA compatible blood for six or seven years. "
It is therefore becoming almost exceptional today that we need to consider the child of the double hope: we have had enough stocks of HLA compatible blood for six or seven years.
Pr. René Frydman, obstetrician gynecologist and "father" of the first drug baby in FranceOctober 2019: the Assembly votes to abandon this practice
It is for these reasons that at first reading, the National Assembly decided to put an end to this practice in France, by the vote of an amendment, in October 2019, by the deputy LR Anne Genevard, signed by 16 of colleagues. "No more French team practices this double PGD" , underlined the deputies, before adding that "the progress made in terms of collection and storage of placental blood units would lead to guaranteeing a therapeutic solution for all needs" , making therefore “unnecessary” the practice of the baby medication.
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"We will make weigh on him the weight of the possibility of the cure of another child" , also alarmed the deputy LR Xavier Breton. The Minister of Health at the time, Agnès Buzyn, had for her part issued a "wisdom opinion", considering that she did not have sufficient hindsight to speak out on the subject, given her past as a hematologist.
2020: the Senate restores the practice, another amendment proposes to intensify it
Abandoned, therefore, the “drug baby”? Nothing is less sure. During the examination of the bill in the Senate, in January 2020, the senators finally reintroduced into the text the technique of DPI-HLA. Then, in a special bioethics committee, last June, the LREM deputy Jean-François Eliaou, proposed, in an amendment, not only to maintain this technique, but also to relax the conditions for using it.
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The deputy cites a study by the Council of State according to which the strict conditions of access would discourage couples from resorting to it, which would explain the total abandonment of this practice since 2014. Indeed, it is currently prohibited couples to resort to a new ovarian stimulation as soon as they have “healthy” embryos, even if the latter are not HLA-compatible. The deputy Eliaou therefore proposes to "remove this condition and allow a new ovarian stimulation, in order to try to obtain HLA-compatible embryos." Caroline Roux, deputy delegate of Alliance Vita, criticizes this new proposal: "This means that there are more embryos that will be eliminated because they will not be HLA-compatible, and therefore unable to save the sick brother or sister. . "
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Professor Frydman procrastinates. For him, it is the progress made in cord blood banks that has made this practice almost useless. However, he pleads for the maintenance of DPI-HLA in order to leave the choice to the parents who really have no alternative, even if "it has not happened for the last six years." The gynecologist also disputes the argument of the purely “utilitarian” conception of the drug baby: “Umut Talha's mother had non-HLA compatible embryos, but she still chose to give birth to twins: this shows that her desire for pregnancy was there. "
Asked by Le Figaro , the deputy LR Xavier Breton, for his part, does not say "personally for the total abolition of the device, but it must remain very supervised" . The deputy however confides to remain suspicious: "It is not necessary that activists take advantage of this possibility of the baby medicine to create a breach in order to go further in the logic of manufacture, of production of children."