A successful bone marrow transplant from a baby created to save the life of its sibling has sparked a heated debate on medical ethics in Switzerland.
The 1 year old, named only as Elodie H, for legal reasons, was born from an embryo selected from a group by pre-implantation genetic diagnosis (PGD) and tissue typing as a fitting donor for her 6 year old brother Noah, who has chronic granulomatous disease that compromises his immune system.
The disease is a rare inherited disorder of phagocytic cells that usually affects males, and leads to recurrent life threatening bacterial and fungal infections. People with chronic granulomatous disease have an average life expectancy of 30 years unless they have some form of stem cell treatment, usually a bone marrow transplant.
Parents Beatrice and Yves H, from Geneva, decided to conceive a baby through in vitro fertilisation, PGD, and tissue typing, after all other attempts to find a matching bone marrow donor for their son failed. As the PGD procedure is illegal in Switzerland for any purpose other than to prevent a genetic disease in the embryo itself, it was done in a laboratory in Belgium.
Elodie was born in Geneva last January and the bone marrow transplant was successfully completed in Zurich Children’s Hospital by the end of January 2006. She is the world’s 12th baby to be conceived for the purposes of saving the life of a sibling.
Reinhard Seger, who did the operation, said, “The operation was a success and both children are doing well. Noah’s immune system is gradually building up and only the number of T lymphocytes is still insufficient.”
For the past two months, Noah has been able to live at home without the need for total isolation and the continuous antibiotic treatments he was previously given.
But the case has caused heated debate in Switzerland, with supporters of the procedure demanding a change in the laws to come in line with legislation in the United Kingdom, where a special commission, the Human Fertilisation and Embryology Authority, can approve requests for “saviour siblings,” while opponents warn that the practice may lead to quiet acceptance of positive eugenics.
The country’s current legislation allows for the analysis of genetic disease in embryos, but forbids the selection of a particular embryo for the sake of a child being born with particular characteristics.
Dr Judith Pok, a member of the National Ethics Commission that participates in the review of PGD legislation, said, “I am truly happy for Noah’s family success. But in Switzerland we only want to allow for embryonic examinations for genetic diseases. Creating designer babies according to specific characteristics that are not relevant for the embryo itself is going too far.
“I also ask myself whether we really want to take every disease, every disability, and wipe them out. Do we not have to accept this up to a certain point?”
Noah’s doctor, Dr Seger, however, is one of those calling for the UK model to be applied and said, “We should create a high profile body comprising of specialists from all areas—doctors, psychologists, ethicists—that would facilitate the difficult choice and enable a legal framework for this to be set up in Switzerland.
“More and more parents are asking for this possibility, but doctors are unable to help due to culpability. That is unacceptable.”
Noah’s mother, Beatrice, said, “People cannot imagine all the things we have gone through since Noah’s birth. Our lives have only revolved around the disease. Now we are happy and we can see the light at the end of the tunnel for the first time.”