Drug babies in gestation in France

Adam Nash is now 8 years old. According to the American press, this young boy who was the first “baby medicine” in the world, is doing wonderfully, as well as his older sister. Molly is now 14 years old. However, because of Franconi’s disease from which she suffered, her doctors only gave her ten years to live, without a bone marrow transplant. Adam’s healthy cells therefore saved his big sister.
Around the world, a dozen other “double hope babies” have since emerged. The last was born in Spain on October 12. In France, this technique has been authorized since the promulgation of the 2004 bioethics laws and a decree in December 2006.
On paper, the principle is simple: it all starts with IVF. The embryos obtained are then subjected to a pre-implantation diagnosis (PGD) to select those which are healthy but also compatible with the immune system of the brother or the older sister suffering from a genetic disease. The embryo or embryos meeting this double requirement are then implanted in the mother’s uterus. A few days after birth, a healthy cell transplant can be performed for the benefit of the elder. 8 couples waiting

Since this technique was authorized, “the biomedicine agency has received 8 requests”, explains Prof. François Thépot, assistant to the medical and scientific director of the Agency. And the first birth could occur within a few months since a couple is under treatment at the Antoine-Béclère hospital (Clamart). A figure a priori modest which can be explained in particular by the fact that the law scrupulously regulates this practice. The files are only retained if the child has a serious hereditary disease for which no other therapeutic outcome has been found. It is often sickle cell anemia or beta thalassemia. For these couples, this double DPI represents the last hope to save their child.
But, the chances of success are rather slim. “In fact, we have a 3 in 4 chance of obtaining a healthy embryo and then a 1 in 4 chance that these embryos are also histocompatible with the genetic heritage of the brother or the sister, that is to say 18% of chances of success, explains the Dr Nelly Frydman, head of the IVF laboratory at Antoine Béclère hospital, the only PGD center to have embarked on the adventure. And 18%, we know for a fact that it is low. Especially since women have often already had two or three children and are over thirty years old. Which complicates the task ”.
“In addition, international experiences teach us that in reality, the chances of success drop to around 10%,” says Dr Julie Steffan, geneticist at Necker Hospital and member of the team that takes care of couples. . On the other hand, the good news is that once performed, these intra-family transplants have a 70-90% chance of not being rejected. Parents, they want to retain only the dose of additional hope. On the professional side, the babies of the double hope are not unanimous. Some people regret that the fate of healthy but incompatible embryos has remained in the dark. Others continue to question the ethical aspect: conceiving a child to heal another may not be neutral. “And the children conceived naturally to save their elder, nobody is interested in their future, loose Dr Frydman. Everyone washes their hands of it! When I was an intern, parents who had a first child with a hereditary disease were advised to have a second. But, that’s sending them to the lottery! “

Questions to Dr Nelly Frydman, head of the IVF laboratory at Antoine-Béclère hospital

The law is problematic

Why is the Antoine Béclère hospital the only center to have embarked on the adventure of babies of double hope?
Dr Nelly Frydman : The two other pre-implantation diagnostic centers (PGD), which are Montpellier and Strasbourg, consider that the law is poorly made. They believe that the legislator has not “wet enough” on the fate of embryos which are healthy but not compatible. This is indeed a fundamental question, but we did not want to walk away because the demand is there. We are therefore the only ones to have been there. Of course, in consultation, we always ask couples what they want to do with these embryos, although our psychiatrist believes that we make them suffer. But, all couples tell us that they don’t want it. Most of the time, they have already had a 2nd or even a 3rd child that was not compatible. They do not come to see us to redo what they have already tried naturally. This is understandable.

What do you suggest for these healthy and incompatible embryos?
Dr NF We suggest that couples freeze them. It’s a way of pushing back the problem and giving time to the people we care for. Moreover, in practice, the first couple on which we performed a histocompatibility PGD accepted the transfer of a healthy but non-compatible embryo after the failure of a compatible embryo transfer. This is how the human being …

Are these couples psychologically followed?
Dr NF. A psychiatrist attends the consultations and they can call on her throughout the course. But they rarely do, because these couples know what they want.