If there were a chance that the miracle of birth could help fuel a medical miracle, wouldn’t you do it?
Jack and Lisa Nash of Englewood, Colorado did, and are now blessed with a healthy sixteen year-old girl and ten-year old boy. But their decision to use in-vitro fertilization (IVF) as a way to save the life of there eldest daughter troubles many and fuels the ongoing debate about the ethics and policies surrounding embryonic research.
Molly Nash was ten years old when her parents decided to use reproductive technologies to save her life. Born with Fanconi Anemia, an incredibly rare blood disorder, she was set to suffer with leukemia before she even reached her teenage years (1). But her parents, in a desperate search for a solution to the rare genetic disorder they both unknowingly carried, discovered the possibilities of IVF via Dr. John Wagner—a pediatrics professor and director in the Division of Hematology-Oncology and Blood and Marrow Transplantation and in the Center for Translational Medicine at the University of Minnesota (3). Because the only treatment for Fanconi Anemia is a bone marrow transplant, preferably from a sibling with identical tissue (HLA), he suggested the use of IVF to “produce several embryos, then genetically test all of them for both Fanconi anemia and the HLA type” (1). If everything worked to their advantage, they would be able to choose a healthy embryo and doctors could then use the umbilical cord blood of the newly created infant as a source of healthy bone marrow for Molly (1).
Thankfully, the Nash’s decision to use Dr. Wagner’s plan worked: Adam Nash was born a “savior sibling” and six weeks later, Molly finally received the bone marrow necessary to treat her disease.
But despite Molly’s survival and the successes of more than 6,000 cord blood transplants, critics remain skeptical (4). They believe that the Nash’s story, and the many others like it, are provoking the death of evolution and creation of “Frankenstein babies” (1). These critics base their arguments upon three main points: that these “savior siblings” are leading to a commodification of human life, that this embryonic reproduction will lead science and society down a slippery slope towards a common use of “designer babies,” and that upon developing past infancy, “savior siblings” are likely to suffer both physically and emotionally (2).
Furthermore, although Dr. Wagner stands strongly behind his research and hopes that “cord blood can be a donor source of stem cells for everyone regardless of age, size, or ethnic and racial background”, he has witnessed what can happen when IVF and embryonic reproduction goes awry (4). One of his patients aborted four of her babies when all the embryos failed to pass the necessary genetic tissue typing and in another example, his patient lost a pregnancy when amniocentesis, a genetic test for fetuses required as a preventive measure, ruptured her uterine membrane (1).
Though these unfortunate stories and strong critiques may push one to abandon the idea of IVF and continuing embryonic research, it is necessary to remember the lives saved through these procedures and acknowledge that the preceding stories of fatality come not from a fault in the technology itself, but rather in the misuse of science stemming from holes in the overall system. Stronger laws need to be put in place to help safeguard the patients participating in these procedures. Along with this, review boards need to be more involved in the process on an individual case-by-case basis as a way to curtail the worries of “designer babies”, commodification, and prospect of these “savior siblings” suffering later in life.
Because of Dr. John Wagner’s research and further experimentation in the field of umbilical cord blood transplants, Molly survived, the Nash’s have a second health child, “patients with diseases previously considered to be ‘incurable’” are now able to survive, even as this field is continuing to expand (4).
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Sources:
1. http://www.startribune.com/lifestyle/health/103584799.html?page=1&c=y
2. http://jme.bmj.com/content/30/6/533.full
3.http://www.stemcell.umn.edu/faculty/Wagner/home.html
4. http://www.cancer.umn.edu/research/programs/ucbwagner.html
1 comment:
Although I agree that the benefits of savior siblings are enormous and that the practice of using IVF to select for a sibling with identical HLA to a terminally ill child should not be banned outright, I fear that, without a comprehensive regulatory system to monitor the various avenues along which the savior sibling system can go awry, there is the potential for this process to cause great harm.
You mention review boards as "a way to curtail the worries of 'designer babies', commodification, and prospect of these 'savior siblings' suffering later in life." A review board is indeed in a position to examine the ethics of performing the procedure at hand on a case-by-case basis, but I find it hard to believe that in doing so, review boards might also be able to tackle the broad societal concerns of general genetic modification of children and commodification of human life. In order to effectively address these concerns, concerns which stem from many other sources in addition to savior siblings, regulations and a corresponding regulatory structure must be enacted on a broad, national level.
On the other end of the spectrum, review boards are also incapable of addressing the concern of savior siblings suffering later in life, and a second regulatory system should be created to mitigate this worry. Although I personally believe that parents should only be allowed to have children if they are financially and emotionally capable of taking care of them, the general public sentiment right now seems to point in the opposite direction, so I would not advocate regulating their right to have the child based on their financial and emotional security. Nevertheless, because of the unique hurdles that can come from being born as a savior sibling, these sibling deserves access to a system established specifically for the purpose of maintaining their psychological health and ensuring that parents are doing their part to raise and care for savior siblings just like every other child. As Sheldon and Wilkinson say, there is nothing wrong with a child being born with a specific purpose in mind, as long as they are not born solely for that purpose.
Whether such a support system is already in place I do not know, but the practice of savior siblings should not be allowed to continue without it.
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