When living kids become organ donors

The passage below, quoting “Anna,” the traumatized child protagonist in Jodi Picoult’s disquieting novel, My Sister’s Keeper, sets the messy table for this essay:

My parents tried to make things normal, but that’s a relative term. The truth is, I was never really a kid. To be honest, neither were Kate and Jesse. I guess maybe my brother had his moment in the sun for the three years he was alive before Kate got diagnosed, but ever since then, we’ve been too busy looking over our shoulders to run headlong into growing up. You know how most little kids think they’re like cartoon characters—if an anvil drops on their heads they can peel themselves off the sidewalk and keep going? Well, I never once believed that. How could I, when we practically set a place for Death at the dinner table?

Kate has acute promyelocytic leukemia. … [and] I’m an allogeneic donor— a perfect sibling match. When Kate needs leukocytes or stem cells or bone marrow to fool her body into thinking it’s healthy, I’m the one who provides them. Nearly every time Kate’s hospitalized, I wind up there too.

It’s a situation I long believed was entirely fictional, or at least illegal. Inflicting such pain and trauma on a live kid for the sole purpose of helping a biological sibling has to be at least immoral—even child abuse—right?

Conceiving live organ donors via IVF

And in Anna’s case the ethics are even smarmier: she was purposely synthesized in a test tube via in-vitro fertilization (IVF) for this seemingly very objectionable purpose.

But I was wrong. In the United States, where I live, producing live donor siblings, as in Picoult’s novel—so-called “Savior Siblings”—is actually legal, albeit under fairly strict legal and ethical guidelines.

The American Academy of Pediatrics’ (AAP) position is that, with parental permission and the child’s assent, “minors can morally serve as living organ donors but only in exceptional circumstances when specific criteria are fulfilled,” according to the National Center for Biotechnology Information’s National Library of Medicine.

However, determining “assent” of minors for such a procedure, especially of very young children, clearly must be more art than science.

Also, there are no US federal laws specifically regulating child organ donation, so laws and accepted practices currently vary from state to state. Part of the reason for this is that the US does not have a federally funded national healthcare system, unlike in the United Kingdom and France, for example, which do (and also do have federal child organ-donor laws).

America’s religious resistance to regulating child organ donors

Another reason for America’s patchwork legal framework regarding this issue is ideological and religious in a traditionally largely Christian country.

According to a 2018 article in the American Medical Association’s (AMA) Journal of Ethics, the use of preimplantation genetic diagnosis (PGD) technology is fraught with cultural baggage in America. The process allows parents to delete unhealthy genetic traits from embryos in IVF, ultimately leading to a live child’s organ donation.

The article’s author, Harvard University med student Michelle Bayefsky, noted:

Unlike in many European countries, [PGD] is not regulated in the United States. As a result, PGD may be used for any condition for which genetic testing is available, at the discretion of fertility specialists and their patients. … Federal or state regulation of PGD in the United States is likely to be challenging and problematic for several reasons, including the proximity of PGD to the abortion debate.

Bayefsky added that “for those who believe life begins at conception,” there are important parallels between a decision to abort a fetus and to relocate or manipulate an embryo.

What this effectively means is there are no specific federal protections in place for minor organ donors, which leaves these momentous public-policy decisions to the states or to parents in consultation with medical professionals.

‘Rare’ does not mean never

Fortunately, the live harvesting of organs to benefit siblings of naturally born children and those purposely created for the purpose is relatively rare, although the aggregate numbers seem large. But often, only child-size organs are necessary for transplant, requiring that they come from other children, not adults (whose uncoerced assent can be more readily assessed).

The AAP noted in 2008 that,

Although live children continue to be a rare source of solid organs in the United States, data from the United Network for Organ Sharing (UNOS) reveal that at least 60 children younger than 18 years served as living kidney donors between 1987 and 2000, during which time approximately 40,000 live kidney donations occurred. At least 4 minors in the United States have served as living liver donors since 1989. There is a case report from Switzerland of a 13-year-old donating a portion of small bowel to an identical twin. Although children younger than 10 years rarely serve as living organ donors, there is a case report in the literature of a 7-year-old identical twin serving as a kidney donor and a second documented kidney donation by a child younger than 10 years on the Organ Procurement and Transplantation Network data report.

Beyond the profound moral and ethical considerations live-child organ donations entail, they also require profoundly personal decisions.

In the past two decades transplants for patients of all ages have soared with medical advances in transplantation knowledge, technique and technology. The website Donate Life America recently reported,

There are currently 1,900 children under the age of 18 waiting for a variety of organs, and more than 25% of them are under 5 years old. In 2020, more than 1,700 children received life-saving transplants, matched from nearly 900 pediatric organ donors. … More than 500 children waiting for a donor organ are between 1 and 5 years old.

Thousands of reasons to regulate child organ donations

That’s thousands of compelling reasons for the US to codify a comprehensive federal legal framework to protect children who may be compelled to donate organs while they’re alive.

Beyond the profound moral and ethical considerations live-child organ donations entail, they also require profoundly personal decisions. As a parent of identical twins, for example, what would you do if a donated kidney from one twin would mean the other twin, wracked by terminal kidney disease, could survive?

Or if you were able via IVF technology to conceive a child free of a genetic defect that threatens the life of one of your existing children—and might serve as a life-saving organ donor for that child.

What would you do?

Ideally, any parent would do what’s best for each of their children, which is what most modern child-donor laws attempt to do. Is risking the health of one child worth saving the life of another. It’s a terribly important question in an age where science has made the seemingly impossible possible.

But, being human, we don’t always do what is ideal.

Which is why federal live-child organ donor laws are essential to protect the health and lives of all children in all 50 states from random systemic and bad-faith parental tyranny.

Leaving such universally momentous decisions up to the states—and innocent children at their mercy—is an abrogation of federal responsibility akin to child abuse.