Hannah Nashed: Organ Transplant
Initially, the idea of organ transplantation was met with disdain and seen as a comical creation of the imagination. Illness was perceived as a disturbance of equilibrium, leading treatments to prioritize restoring balance —such a narrative left no room for the idea of organ transplantation (Schlich, 2011). However in the later half of the 19th century, “surgeons began to view the body as a composite of organs and tissues with specific functions and realised that surgery could be used to remove diseased tissues or restore function” (Schlich, 2011). This time period also saw the rise of antibiotics, making surgery safer by decreasing the risk of infection. This shift in mindset, coupled with significant technological advancements, set the stage for the emergence of organ transplantation.
Brought into the spotlight through the work of Swiss surgeon Theodor Kocher, thyroid transplants became the first instance of organ transplantation —setting a precedent for subsequent transplants and laying the groundwork for the field as a whole (Schlich, 2011). The idea of removing an organ from one specimen and inserting it into the body of another eventually gained general acceptance in 1900, and in 1954, the kidney became “the first human organ to be transplanted successfully” (“The History of Organ Donation,” 2023). In the following decades, surgeons would perform successful liver, heart, pancreas, and lung transplants, widening the scope of both the field and the ethical questions surrounding it.
Organ donation falls into one of two categories: living donation, and deceased donation. This paper will focus primarily on the requirements and ethical dilemmas surrounding living donors, particularly concerning the right to informed consent.
The most common living donations are kidney and liver transplants. Each person is born with two kidneys, yet only one is essential for survival. Therefore an entire kidney can be removed and transplanted, effectively saving the recipient's life while enabling the donor to maintain roughly the same quality of life prior to donation. Livers present a slightly different case: it is possible to transplant only a portion of the liver, while the rest of the liver cells are left to regenerate gradually until the organ is restored to its original size. While other organs such as one lobe of the lung, a segment of the pancreas, and a portion of the intestine can also be transplanted from living donors, such procedures are rare (“Living Organ Donation,” 2023). Such organs are also incapable of regeneration, resulting in potentially greater side effects for the donor. According to the United Network for Organ Sharing (UNOS) to be a living donor, one must be 18 years or older and in “good overall physical and mental health” (“Living Donation Facts,” 2024).
Due to the nature of living donations, they typically occur through a process known as directed donation by which the “donor names the specific person [they would like] to receive the transplant” (“Living Donation Facts,” 2024). The donor and recipient must be a close match histologically, meaning that the best donors are typically close family relatives such as a parent or a sibling. However, donors can also be a “biologically unrelated person who has a personal or social connection with the transplant candidate [...] or a biologically unrelated person who has heard about the transplant candidate’s need” (“Living Donation Facts,” 2024).
As aforementioned, the best match for an individual in need of an organ transplant is oftentimes someone from the recipient’s immediate family. However, such donations must be deemed voluntary and consensual. In the case of McFall v Shimp (1978), Robert McFall suffered from a rare bone marrow disease and needed a bone marrow donation in order to survive. McFall’s first cousin, David Shimp, had a high bone marrow compatibility, but refused to complete the compatibility testing process. McFall attempted to legally compel Shimp to submit to the bone marrow transplant through a preliminary injunction, however the court struck it down “stating that while the defendant’s refusal was ‘morally indefensible,’ the court would not force him to subject himself to the transplant” (Ingram, 2021). Such a ruling established the precedent that an individual could not be legally compelled to submit to medical treatment for the sake of saving another’s life. This effectively upheld the idea of bodily autonomy that served as the basis of reasoning in deciding the legality of abortion in Roe v Wade several years earlier. By reemphasizing this principle, the court also established a unique distinction between one’s legal and moral obligations by professing the notion that “the individual does not exist to serve the society as a whole” (Ingram, 2021). Thus, McFall v Shimp also served to underline the importance of obtaining consent. However, there then arises the issue surrounding organ donation for those who lack the mental capacity to consent as seen in Strunk vs Strunk (1969).
Tommy Strunk, age 28, was diagnosed with chronic glomerulonephritis, a fatal disease that attacks the kidneys. His brother, Jerry Strunk, age 27, is considered medically incompetent with a mental age of approximately six years old. It was eventually determined that in order to survive, Tommy would need a kidney transplant and Jerry happened to be the only relative who was a viable donor. Due to Jerry’s lack of mental capacity, he could not offer valid informed consent. The court was thus faced with the question of whether or not the parents could consent on Jerry’s behalf via substituted judgment. A psychiatrist testified that, given his knowledge of Jerry and Tommy’s relationship, the “death of Tommy under these circumstances would have ‘an extremely traumatic effect upon [Jerry]’” (“Strunk v. Strunk”). Consequently the court deemed that, under these particular set of circumstances, the operation was necessary as it was not only in the best interest of Tommy but also in the best interest of Jerry who was dependent on his brother both emotionally and psychologically. The court reasoned that Jerry’s “well-being would be jeopardized more severely by the loss of his brother than by the removal of a kidney” (“Strunk v. Strunk”). Thus, even though the procedure wasn’t medically in Jerry’s best interest, it was seen to be in his best interest in a more construed sense. This emphasis on the emotional and psychological benefits is crucial in deciding whether the court holds the authority to mandate a surgical procedure for an individual deemed "mentally incompetent." If this condition is not met, then the court may not have sufficient grounds to intervene in medical decision-making on behalf of the individual.
For instance in Lausier v Pescinski (1975) Jancie Pescinski Lausier was appointed guardian of her brother, Richard Pescinski who was diagnosed as a catatonic schizophrenic. A third sibling, Elaine Jeske, was in dire need of a kidney transplant having suffered from kidney failure once again as a result of chronic glomerulonephritis. Richard happened to be the only suitable donor as all other family members had been eliminated as possible candidates due to age or health concerns. However, given Richard’s condition, he was withdrawn entirely from the social world and held no real relationship with his sibling. Richard also offered no form of consent or willingness to go through with the procedure. Thus, the court denied the family's request to proceed with the operation on the basis that there was “absolutely no evidence here that any interests of the ward will be served by the transplant” (“In Re Guardianship of Pescinski”). This case highlights that in the absence of the ability to consent, the donation must be in the donor’s best interest. In other words, there must be some discernible benefit to the donor in order for a transplant to take place.
As a consequence of the various difficulties and uncertainties in obtaining life-sustaining transplants, parents who know that their child will most likely need a transplant in the future will sometimes have a second child, known as a savior sibling. In short, a savior sibling “is a child who is born to provide an organ, bone marrow, or cell transplant to a sibling that is affected with a fatal disease” (Zúñiga-Fajuri, 2018). Such children are essentially “created” via in vitro fertilization in accordance with a pre-implantation genetic diagnosis. Though such practice seems, at least in part, inherently controversial, it has been deemed an ethically admissible practice and has already been legally incorporated in several different regions including North America, Europe, and Australia (Zúñiga-Fajuri, 2018). Nevertheless, the legality and ethical principles of such a practice are questionable in the light of the precedent set forth by the aforementioned cases.
Since savior siblings are usually children when they are considered as organ donors, consent cannot be obtained in the prototypical manner. As a consequence, the U.S courts have generally employed the same criteria to resolve issues of consent for children as they would for individuals deemed legally incompetent as seen in Strunk vs Strunk and Lausier v Pescinski: the substituted judgment standard in which a representative decides what is best in their opinion, or what they believe the patient would want, and the best interest standard. The case of savior siblings is particularly interesting due the fact that the representatives of savior siblings (the parents) essentially created the child for the sole benefit of their other child and thus, according to the substituted judgment standard, would always be in favor of proceeding with a given medical procedure. Additionally the best interest standard is also hard to determine given the fact that when the transplant takes place, the savior sibling is often still very young. In Lausier v Pescinski it was decided that the transplant could not take place because there was no direct benefit to the donor —which raises the question of whether or not it is truly in the best interest of a child to donate an organ to a sibling they do not know in any concrete sense. It is important to note that as a consequence of bone marrow or organ transplants, infant donors may face extreme fatigue, pain at the point of extraction, nausea, difficulty sleeping, infection, temporary or permanent disability, or even death (Zúñiga-Fajuri, 2018). Such a stream of negative consequences makes it apparent that organ donation for a child is almost never medically beneficial which raises the question of whether or not it has any psychological benefits.
In the case of Strunk v Strunk organ donation was deemed necessary due to the brothers’ established relationship. However in the case of a newborn, there is inherently no prior relationship to base a decision off of. Infants in this sense can be somewhat likened to Richard Pescinski in Lausier v Pescinski who was unable to form any real attachment with his sibling as a consequence of his condition. The U.K has addressed this moral qualm by expanding the definition of “best interest” to include “the interest of the entire family” (Zúñiga-Fajuri, 2018). Yet such an expansion seems somewhat ill-based considering the fact that it essentially disregards the bodily autonomy established in McFall v Shimp as well as Roe v Wade in favor of the “greater well-being” of a specific subset of people. This solution also fails to acknowledge the potential psychological impact on a savior sibling when they become aware of the true purpose of their conception —having ultimately been produced for the sole purpose of saving the life of another. This in turn “violates the categorical Kantian moral principle which states that ‘as an end in itself humans are required never to treat others merely as a means to an end, but always, additionally, as ends in themselves’” (Zúñiga-Fajuri, 2018).
According to Kant, cognitively limited individuals (a category that includes all infants due to the fact that they fundamentally lack a degree of mental capacity) maintain the same moral status as any other rational being and thus must be treated as such (Johnson and Cureton, 2022). Having children for the sole purpose of using their organs to save another can be seen as disregarding the childs’ basic moral status —having reduced their personhood to a mere “means to an end.” This practice underscores the concern around the commodification of human life, having objectified a child’s existence rather than recognizing their intrinsic worth as a human being.
Overall it is clear that the use of savior siblings as live donors has been treated somewhat as exemption from the typical rules regulating living donation. The practice is not only ambiguous in meeting the criteria necessary for informed consent but also disregards the precedent set forth in prior living donation cases, neglects the established principle of bodily autonomy, and prompts various ethical questions concerning the value of human life. The artificial and selective creation of such children requires a careful reflection on the rights and moral status of the potential donor, ultimately challenging the societal understanding of what it means to give deference to human autonomy.
Hannah Nashed is a Sophomore at Yale University in Berkeley College
Citations
“The History of Organ Donation and Transplantation.” UNOS | United Network for Organ Sharing , 11 Oct. 2023, unos.org/transplant/history/.
“In Re Guardianship of Pescinski.” Justia Law, law.justia.com/cases/wisconsin/supreme -court/1975/668-6.html. Accessed 3 Apr. 2024.
Ingram, Alexia. “McFall v. Shimp and the Case for Bodily Autonomy.” Harvard Undergraduate Law Review, Harvard Undergraduate Law Review, 1 Apr. 2021, hulr.org/spring-2021/mcfall-v-shimp-and-the-case-for-bodily-autonomy.
Johnson, Robert, and Adam Cureton. “Kant’s Moral Philosophy.” Stanford Encyclopedia of Philosophy, Stanford University, 21 Jan. 2022, plato.stanford.edu/entries/kant-moral/.
“Living Donation Facts and Resources from UNOS: Living Donor Transplants.” UNOS | United Network for Organ Sharing , 22 Jan. 2024, unos.org/transplant/living-donation/#:~:text= Transplant%20hospitals%20must%20submit%20follow,may%20not%20cover%20these%20costs.
“Living Organ Donation.” Organ Donor.Gov (.Gov), Health Resources & Services Administration, Mar. 2023, www.organdonor.gov/learn/process/living-donation#:~:text =Unlike%20deceased%20donors%2C%20a%20living,someone%20they%20don%27t%2 0know.
Schlich, Thomas. “The Origins of Organ Transplantation.” The Lancet, 15 Oct. 2011, www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)61601-2/fulltext. “Strunk v. Strunk.” Justia Law, law.justia.com/cases/kentucky/court-of-appeals/1969/445-s- w-2d-145-1.html. Accessed 3 Apr. 2024.
Zúñiga-Fajuri, Alejandra. “Born to donate: proposals for "savior sibling" regulation in Latin America.” Colombia medica (Cali, Colombia) vol. 49,3 228-235. 30 Sep. 2018, doi:10.25100/cm.v49i2.3619.
