A Phenotypic Prometheus?
In Mary Shelley’s Frankenstein, Dr. Frankenstein’s creature famously asks him, “How dare you sport thus with life? Do your duty towards me, and I will do mine towards you and the rest of mankind.” This question regarding a creator’s responsibility for and moral obligations to their creation is becoming increasingly salient as advancements in technology make it possible to take a more active hand in the creation of human life.
Adam Nash, also known as “Frankenstein child,” was born in August 2000 as a “savior child” for his sister, Molly, who suffers from Fanconi Anemia, a rare, life-threatening disease largely affecting bone marrow. The idea of “savior children” is a way for parents to, at a surface level, help their sick child. An embryo is created through in vitro fertilization (IVF) and immediately after birth, stem cells from the child’s umbilical cord are harvested to be promptly used on a sick sibling. In many cases, the use of stem cells can extend to bone marrow and even organ transplants. As opposed to a donor, the “savior child” has a higher probability of being a blood match to the sick child. In the case of Adam Nash, 15 embryos were tested for genetic matches through preimplantation genetic diagnosis (PGD) before he was selected to be brought to term.
Proponents of the concept of “savior children” argue that it can rescue their sick child with minimal hindrance to their sibling. Adam Nash’s mother comments, “We wanted a healthy baby, and it doesn’t hurt [Adam] to save [his sister’s] life.” Using “savior children” also eliminates the obstacle of finding donors in urgent situations and can even make the operation safer. Studies have shown that transplant rejection, in which a patient’s body rejects a donor’s organ, is far less likely in genetically related donors. Adam Nash comments on his feelings about his sister, saying "I like being able to help her, it gives you a very heavy purpose.”
Still, some are hesitant to embrace a new medical paradigm in which selecting embryos for their potential to save the lives of others is standard practice. According to Dr. Jeffrey P. Kahn, director of the Center for Bioethics at the University of Minnesota, ''we've crossed the line that we really never had crossed before, selecting based on characteristics that are not the best for the child being born, but for somebody else.” Moreover, one might worry that the normalization of “savior children” invites further — and perhaps less justifiable — experimentation with the genetic characteristics of children. After all, is there really such a great difference between using technology to create a child with a particular blood type and using it to create a child with blue eyes rather than brown? Both children are, in some sense, made to their parents’ specifications.
DISCUSSION QUESTIONS
Who, if anyone, is morally obligated to look out for the protection of “savior children?”
How far can parents ethically go to save a child?
Is it morally permissible to bring a new child into life for the purpose of helping an existing child?
Is it unfair to Adam to saddle him with this responsibility to save his sister?
References
[1] Shelley, Mary. Frankenstein. Edited by J. Paul Hunter, 3rd ed.
[3] The New York Post, “WE’RE CREATING LITTLE FRANKENSTEINS”
[4] Denver 7, “17 years later, Nash family opens up about controversial decision to save dying daughter”
[5] The New York Times, “Son Conceived To Provide Blood Cells For Daughter”
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