I recently read a fascinating ethics consult about the topic of savior siblings. A savior sibling refers to the creation of a genetically matched embryo that will be implanted, and after birth used to be the savior of a sick sibling in need of a donor.
Typically, the savior sibling provides bone marrow or stem cells from the umbilical cord blood, which is collected at birth and then transfused into the child who is ill and in need of a donor. The savior sibling may be needed once for the medical treatment of their sick sibling or on a repeated basis if needed.
The creation of the savior sibling takes place in the laboratory. Eggs are harvested from the mother. Sperm is collected from the father. Embryos are created in the lab and through pre-implantation genetic diagnostic testing (PGD), the embryos are screened and the embryo that is the genetic match for the sick sibling is implanted into the mother’s womb. The other embryos are typically discarded as they aren’t a suitable match.
This ethics consult asked first the question, “Is it ethical to help a family conceive a child whom they would give up for adoption to their neighbors, but use for marrow donation when the child is physically old enough?” The poll showed that 32 percent said it was ethical and 68 percent said it wasn’t. So, in this particular case, the savior sibling was to be given to adoption at birth but used for their genetic material.
More often, the parents keep their child as was the case of Adam Nash, the first savior sibling born in the United States in 2000 to Jack and Lisa Nash. Adam was born to rescue his sister Mollie, who had been diagnosed with Fanconi’s anemia, a rare genetically inherited disease.
If not for a genetic match through donation, Mollie would have died. Now, 21 years later, the Nashes have no regret on their decision and used in vitro fertilization (IVF) and PGD to have Adam. They have since gone onto have another child via IVF and PGD, who wasn’t born with the genetic disease.
But back to the ethics. In the case of the Nash family, 30 embryos were created, and four rounds of IVF were required for Lisa to get pregnant and deliver Adam, a healthy baby boy without the gene that causes Fanconi’s anemia.
And what about other uses of creating and designing our children for other reasons, not only to save the life of another child in need? The use of sex-selected IVF is already mainstream with people using IVF and PGD to choose their child because they prefer a boy over a girl.
As the ethics consult pointed out, the state rarely looks at the motives of parents when they decide to have their children, but this is different. This isn’t deciding to have children or not to have children, this is deciding to have a particular kind of child to serve the needs of another.
Whether we look for moral guidance from our religious texts or to secular historical documents, it’s important that we remain rooted in the belief in the inherent dignity of all persons.
The U.N. Declaration on Human Rights warns that wherever there is “disregard and contempt for human rights,” “barbarous acts” are sure to follow. Surely, the rights of the savior sibling have been denied when from their first breath they are being used as a means to our particular end.
- Jennifer Lahl, MA, BSN, RN, is founder and president of The Center for Bioethics and Culture Network. Lahl couples her 25 years of experience as a pediatric critical care nurse, a hospital administrator, and a senior-level nursing manager with a deep passion to speak for those who have no voice. Lahl’s writings have appeared in various publications including Cambridge University Press, the San Francisco Chronicle, the Dallas Morning News, and the American Journal of Bioethics. As a field expert, she is routinely interviewed on radio and television including ABC, CBS, PBS, and NPR. She is also called upon to speak alongside lawmakers and members of the scientific community, even being invited to speak to members of the European Parliament in Brussels to address issues of egg trafficking; she has three times addressed the United Nations during the Commission on the Status of Women on egg and womb trafficking.