An Indian Baby ‘Savior Sibling’ Just Gave Her Brother Bone Marrow. But Is It Ethical?
India just conducted its first successful experiment with ‘savior sibling’ therapy, in which a baby was conceived through in-vitro fertilization for the purposes of donating bone marrow to an older ailing brother struggling with thalassemia, a condition characterized by low levels of hemoglobin in the blood that requires frequent blood transfusions. While the doctors involved in the therapy celebrated their success this week, some on social media challenged the ethics of such a therapy, in which a baby was essentially birthed to save her sibling.
In this case, the child with the genetic disorder needed a bone marrow transplant to cure his disease, and the chances of a successful cure are higher if coming from a person whose proteins (human leukocyte antigens, or HLA) exactly match those of the child. None of the child’s existing family members was a match, further complicating the process of getting a bone marrow transplant — an already difficult process to execute. The parents, in an effort to create a perfect bone marrow match for their child, underwent three cycles of in-vitro fertilization, out of which 18 embryos were created, and one perfectly matched that of the child, and was disease-free, using a technique called pre-implantation genetic diagnosis (PGD). The embryo was then implanted in the mother’s uterus, carried to term, and a baby girl was born.
“We had to wait for the baby to grow. She had to weigh 10 kg before we could draw bone marrow,” Deepa Trivedi, program director of Sankalp Bone Marrow Unit in Ahmedabad, told The Hindu. It’s been approximately seven months since the transplant, and the older sibling has not needed any more blood transfusions, indicating he has been cured of his thalassemia, his doctors announced.
Savior sibling therapy has already been used in countries such as the United Kingdom, the U.S.A., New Zealand, and France. It’s mainly used to cure genetic blood disorders in children, such as sickle cell anemia or as seen in the Indian case, thalassemia major. The main way this is done, which is a departure from the Indian case, is by harvesting stem cells from a newborn’s umbilical cord, which are then injected into the bone marrow of the sibling with the disease, a practice that works 90% of the time. In case it doesn’t, doctors can take bone marrow from the savior sibling as they grow, in a process that is painful but not known to be dangerous.
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The first ethical concern with this practice is treating a baby as a source for spare parts, as a means to an end, as a commodity. A study of the bioethics of savior sibling therapy, published in the Journal of Medical Ethics, surmised that treating a baby as a means to an end was not by itself a concern that devalued the utility of savior sibling therapy, as long as they’re also treated as human beings. Bioethicists surmise that using cord blood, something that is frequently discarded after birth, cannot endanger a newborn, or prove to be an ethical quandary used against the therapy.
But what has happened in the most recent case in India actually complicates the issue, because it’s not the umbilical cord blood that was harvested from the savior sibling at birth, but bone marrow 10 months into her life, which makes her an organ donor. This traverses thorny territory, as governments strictly regulate organ donation by minors due to issues related to consent. Can a baby consent to donating bone marrow to their sibling, or a 10-year-old consent to donating a kidney to their parent? It depends on where the individual resides, and how old the person being asked to donate is. In India, for example, it was only recently that the Delhi High Court ruled that minors could donate organs or tissues, as long as the procedure didn’t pose a danger to their lives, and only in exceptional circumstances. However, where minors are mostly dependent upon their families, an element of coercion can also manifest. Also, determining whether a child rationally consented to donate an organ to their parent, for example, becomes difficult when we factor in the emotional element of their relationship that can perhaps override their judgments about their own safety.
Another concern is the well-being of the savior sibling throughout their life, both physical and psychological. What’s to stop a parent from asking the savior sibling to be on standby for their entire lives for their sibling’s health, available to be tapped for tissues and organs at any point in their lives? This is the plot of Jodi Picoult’s My Sister’s Keeper (also turned into a film of the same name starring Cameron Diaz), but it is an unlikely scenario in real life, ethics experts have said. The aforementioned organ donation rules can prevent such an exploitative situation from arising, they say, with governments around the world tasked with ensuring the consent of the donor remains at the forefront of organ donation.
The third issue with savior sibling therapy arises out of the process itself — if a parent can select an embryo that perfectly matches their child, what’s to stop them from selecting an embryo for intelligence, or athleticism? This wades into the territory of the production of designer babies, which is an ethical slippery slope that critics have said goes against the natural reproductive order. However, the bioethics study asserts that the connection between savior sibling therapy and the production of designer babies is less of a slippery slope and more of a reach, as the technology might be similar, but the utility of both poles apart — the former is used to save children’s lives, while the latter is a superficial, hypothetical fantasy.
For now, the world of savior sibling therapy, and its perception, remains similar to when parents first selected an embryo to create a savior sibling in the U.S. in 2000. As appeared in a New York Times article at the time, “It is the kind of talk heard with every scientific breakthrough, from the first heart transplant to the first cloned sheep. We talk like this because we are both exhilarated and terrified by what we can do, and we wonder, with each step, whether we have gone too far. But though society may ask, ‘How could you?’ the only question patients and families ask is, ‘How could we not?’” 20 years later, savior sibling therapy still centers the children that can be saved, while government stipulations around the world try to ensure the savior siblings are protected, cared for, and treated as human beings, like any other child.
While a few critics argue for a ban, the bioethics study sums up the dilemma, and perhaps a solution to this ethical debate — “given that a ban will be fatal for a section of the population, the onus of proof rests clearly with the prohibitionists who must demonstrate that these children’s deaths are less terrible than the consequences of allowing this particular use of PGD.
“You have got to have a very powerful reason to resist the means by which a child’s life can be saved.”