Umut Talha’s name means “our hope” in Turkish, and his birth brought some much needed good fortune into the lives of his siblings. The infant, born January 26th of this year, is France’s first reported case of a child being conceived with in vitro fertilization and genetic screening to ensure it could serve as a viable stem cell donor. Umut’s older two siblings suffer from beta-thalassemia, an inheritable blood disorder that requires its victims to undergo regular blood transfusions. Using preimplantation genetic diagnosis, doctors at Antoine Beclere Hospital were able to select Umut from one of twelve fertilized embryos such that he would not have beta-thalassemia and so his umbilical cord blood might treat one or more of his siblings. His sister, aged two, is set to receive cells from his cord blood in the next few months. You can meet Umut and his family in the video below. While his birth is undoubtedly good news for he and his siblings, his arrival has raised more questions about the ethics of genetic selection among embryos. Is Umut simply a well planned addition to a needy family, or is he a sign of more nefarious designer babies to come?
Doctors at Antoine Beclere have named Umut a ‘double-hope’ baby because his conception was designed to grant both him, and another child a healthy life. In the French press, ‘medical baby’ is the term most used, with ‘savior sibling’ popular in English. The concept of genetically screening embryos to guarantee donor status isn’t new – it first found success in the US at the turn of this century. Yet Umut Talha arrives at a time when France is reopening debate on bioethical questions like the ones raised by his birth. After all, if you can screen your embryos to select the one that is the best donor for your other children, why shouldn’t you be allowed to screen for other genetic traits?
News of Umut’s conception has engendered the expected reactions from various parts of the political spectrum. Catholic bishops in France have condemned the action, for instance. However, bioethics surrounding this use of preimplantation genetic diagnosis and in vitro fertilization are hardly clear cut. After all, IVF is a (relatively) common conception technique used by thousands of couples every year, and PGD is primarily aimed at lowering instances of deadly or painful genetic disorders. Are we concerned that Umut was screened to ensure that he would have a life free of suffering from beta-thalassemia, that he was selected to help save someone’s life, or both?
In the end, it may not matter which concerns us most. Cases like Umut are just one example of how genetic testing could affect reproduction at all stages of pregnancy. We’ve seen how prenatal parental genetic screening can be used to reduce instances of recessive genetic disorders. Some pioneering couples are even getting their childrens’ entire genome sequenced many years after birth. There are benefits to these applications of genetic testing that can be as useful (in some cases) as PGD and IVF.
Where there are benefits humans are sure to explore. The only question is whether or not the innovators of embryonic genetic screening will have to do it clandestinely. If cases like Umut encourage France and other nations to permit some measured forms of genetic intervention to help save lives, then we’ll likely see these small seeds of the technology slowly blossom into more complete forms of genetic screening in the years ahead. If, instead, ethical concerns lead us to outlaw such practices then parents will pursue them in other countries. The medical tourism industry is always looking for more patients.
The bottomline is that parents will do almost anything to help their children. If that means having another child, or undergoing ethically complex procedures, they’ll do it. If it means breaking the law, or traveling to somewhere that has a different law, they’ll do that too. Umut Talha is certainly a ‘double hope’ for his family, but he’s also a promise to the world. Just like the other ‘savior siblings’ that have come before him, he heralds a day when parents everywhere will have the power to shape their children from their genetics up.