If your only child would surely die unless you made another baby to create a genetic match for a bone marrow transplant, would you have the second child for this reason alone? Before conceiving, would you be willing to genetically test the embryos to ensure you produced a baby capable of saving your first born?
It’s a decision some parents face. They must consider giving birth to a so called healthy “savior sibling” to harvest the baby’s stem cells to transplant into the sick child. In such cases, parents themselves are unsuitable donors, as are nonrelatives. Only a sibling who has genetically identical tissue can donate the cells. Without the cells – such as those drawn from umbilical cord blood of a healthy baby – the first child will die.
The decision, of course, raises all sorts of ethical questions, from the rights of children to the role of reproductive technology and government regulation in stem cell research and genetic testing.
According to the Minneapolis – St Paul (MN) Star Tribune, the parents of Molly Nash, six years old in 2000, faced this very scenario. Molly was born with Fanconi Anemia, a rare blood disorder that almost always results in leukemia by the age of 10, and likely death without treatment. The only solution was a bone marrow transplant, with the need of donor marrow from a sibling who has genetically identical tissue.
The Nashes hadn’t planned on having more children until a doctor specializing in bone marrow transplantation made a suggestion. They could use in-vitro fertilization (IVF) to produce several embryos, then genetically test all of them for the right match. They would choose a suitable embryo for their baby, and use the infant’s umbilical cord blood as a source of new bone marrow for Molly. The parents agreed to the process, and it worked. Six weeks after her brother Adam was born, Molly got her transplant. Now 16, Molly recently celebrated the 10th anniversary of her transplant, the first of its kind. Without the treatment, she surely would have died.
Two of the biggest issues surrounding such cases are 1) the ethics of creating a child for the primary or sole purpose of saving another; and 2) the decision to use genetic screening to select a child for a trait that would benefit someone else.
Since Molly’s brother was born, dozens of children have been saved using the same or similar procedure used for her. My guess is as medical technology grows more sophisticated, more parents will turn to this option. Admittedly, it is a slippery slope: some parents are interested in this technology not to save a child, but to make a “designer” baby with certain characteristics, such as a specific eye or hair color. For this reason, a number of critics and doctors have called for government and professional oversight of reproductive technology. However, onerous government interference could cost the lives of children like Molly.
If my family faced these questions, I already know the answer. My 8-year-old daughter is an only child and the light of my life. I can’t imagine not doing anything and everything possible to save her if she were sick, including having another child I hadn’t otherwise planned. I would have a second baby to save my first.
For a terrific true account of this very issue, read Saving Henry: A Mother’s Journey by Laurie Strongin. She and her family did everything they could to save her remarkable young son, stricken with Fanconi Anemia. By the way, if you don’t believe it ethical to combine in vitro fertilization with genetic testing to produce a healthy donor baby to save a dying child, please read Strongin’s story before carving that opinion in stone.
