Bioethical Principles in Organ Procurement, Allocation, and Donation
By Jessica Alonso & Meriel Crowley-Wang
Before the first successful organ transplant could take place, doctors had to perform many seemingly irrational experiments. During the 16th century, an Italian surgeon by the name of Gaspare Tagliacozzi wrote a book entitled De Curtorum Chirurgia per Insitionem, in which he explained the procedures he used to perform plastic surgery. One such method involved taking the skin from a patient’s arms in order to reshape their noses and ears.
Centuries later in the early 1900s, medical technology had advanced, but doctors still failed to transplant animal kidneys, typically from monkeys and pigs, into patients with kidney failure. Then in 1936, a Ukrainian doctor named Yurii Voronoy performed the first human kidney transplant from a deceased donor to a live recipient. However, Voronoy was unaware that the deceased donor’s kidney was not biologically compatible with the recipient’s body, which ultimately resulted in the death of the patient. It was not until 1954 when the first successful human organ transplant occurred.
On December 23, 1954, Dr. Joseph Murray and Dr. John Merril transplanted a kidney from one monozygotic twin to another. Unlike Yurii Voronoy’s patient, the twins were genetically identical, allowing for recipient’s body to accept the organ. As a result, the twin who received the kidney was able to live for an additional eight years. This single procedure sparked a great advancement in the understanding of organ transplants. “Liver, heart and pancreas transplants were successfully performed by the late 1960s, while lung and intestinal organ transplant procedures were begun in the 1980s” (UNOS). While today advances in surgical technology have made organ transplants easier for doctors to perform, new ethical issues have arisen.
Let us examine the case of savior siblings. Despite being popularized in fictional works like the novel-turned-film My Sister’s Keeper, savior siblings rarely enter bioethical and legal discussions, yet the ramifications of their conception are significant.
Savior siblings are children who have been conceived via in vitro fertilization (IVF) in order to serve as a compatible donor of biological materials, such as blood or bone marrow, to a seriously ill older sibling. This raises two issues: (1) whether the savior siblings will be treated as a commodity (‘spare parts’); and (2) what happens if the child, who was conceived for the purpose of biological materials donation, does not want to serve as a donor?
The premise of My Sister’s Keeper (without the subsequent complications) serves as an excellent case study. It follows thirteen-year-old Anna Fitzgerald, who is a compatible human leukocyte antigen donor to her older sister Kate. Kate is suffering from acute leukemia, and Anna was conceived to be a source of biological material for Kate. When she was born, Anna’s umbilical cord blood was salvaged in order to harvest stem cells that may be used to treat her sister. Throughout her life, Anna has also donated blood, bone marrow, and other biological materials. However, when Anna is told that she will have to donate one of her kidneys to her older sister, she refuses and sues for medical emancipation, arguing that the ambiguity of the procedure’s success and the major impact it would have on her life should allow her to make her own medical decisions.
What happens when a family member does not want to donate one of their organs to a sibling, parent, or spouse? How do healthcare providers balance the needs of their patient, the donor, and the family?
This is where bioethics enters. In 2015, the Department of Health and Human Services (HHS) published a report on the “Ethical Principles in the Allocation of Human Organs”, which outlined how organ donation, allocation, and transplantation is governed by three bioethical principles: utility, justice, and respect for persons.
Utility refers to the utilitarian school of thought, which advocates that the best course of action is the one that benefits the most people. When in relation to organ allocation, the goal for the physician should be to “maximize the expected net amount of overall good,” which could include “saving life, relieving suffering and debility, removing psychological impairment, and promoting well-being” (“Ethical Principles”).
However, the HHS emphasizes that there are principles of utilitarian philosophy that have no place in the healthcare setting. When determining organ allocation, “the social worth or value of individuals should not be considered, including social status, occupation, and so forth” (“Ethical Principles”).
The second bioethical principle, justice, concerns the “fairness in the pattern of distribution of the benefits and burdens”, or in other words how the ‘good’ produced by utilitarian thinking is “distributed among potential beneficiaries” (“Ethical Principles”). In essence, every patient should have equitable access to transplant-related care, specifically organ transplant waiting lists. This ties back into how the social value of individuals should be irrelevant with regard to healthcare.
Justice is also paramount because the United Network for Organ Sharing (UNOS), the only Organ Procurement and Transplantation Network (OPTN) in the country, is a federally funded program. As a result it is a public program, and “in a public program, all members of the public are morally entitled to fair access to its benefits” (“Ethical Principles”).
The final bioethical principle is a respect for persons. The HHS holds that physicians “owe to humans a respect that they be treated as ‘ends in themselves,’ not merely as means”. This view should effectively eliminate the ‘spare parts’ perspective that some worry will come to dominate discussions of organ procurement. In recognizing the humanity and dignity of their patients, physicians are able to make the most just decisions.
This extends to bodily autonomy, which is a subcategory of this principle. As such, “actions or practices tend to be right insofar as they respect or reflect the exercise of self-determination,” which renders decisions made under duress without value (“Ethical Principles”). Therefore, an individual may not be coerced into donating an organ or accepting one.
Nonetheless, there are, similar to utility, limitations to bodily autonomy. The US’s “current organ allocation system prioritizes justice over respect for autonomy,” which is why the selling of organs is prohibited (“Ethical Principles”). The challenge, then, lies in balancing all three principles in order to determine the best course of action.
Now, let us apply these principles to the aforementioned case study. In this particular situation, a respect for bodily autonomy would trump the case made for both utility and justice. Anna does not wish to donate her kidney to her sister, and she does not have to, regardless of her status as a savior sibling and a minor. An unwilling donor cannot be coerced into donating, for the compelled donation of an organ is inherently unethical.
Not only would it violate the principle of autonomy, but it would also fail to meet the standards for a just and utilitarian donation. Justice concerns the fair distributions of the benefits of organ donation, and “not exclusively… the aggregate amount of medical good that is produced” (“Ethical Principles”). Therefore, the lack of donation, which could be medically disadvantageous for Kate, is not in violation of the principle of justice.
Similarly, the benefits that an organ donation could provide Kate, do not outweigh the harm (physical, mental, and social) that it could cause Anna. The net amount of ‘good’ is not in favor of a forced donation. Not solely would it negatively affect the donor, but it also has broader social ramifications, such as its impact on organ harvesting and trafficking. This ultimately renders a compelled donation in violation of the principle of utility. As such, a physician would side with Anna.
The root of these ethical considerations also stems from the fact that the demand for organs is a lot higher than the supply. But what if there was a way for society to influence an individual’s willingness to donate organs without forcing them to?
In 2009, economics professor Dan Ariely gave a TedTalk where he briefly touched on the topic of organ donations. In his research, he found that countries including Austria, France, Hungary, Poland, and Portugal had 100% of drivers donating organs. Meanwhile in Denmark, the Netherlands, the UK, and Germany, less than 30% drivers were donating organs.
One might presume that the nations with 100% of drivers donating organs simply had more sympathetic populations, but that is not the case. What Dan Ariely realized was that in these countries, drivers were asked when registering for licenses to “check the box below if you do not want to participate in the organ donor program”. Those who did not check the box were ultimately put into the organ donating program. This is an example of an opt-out system, which automatically establishes a person as an organ donor and requires them to check the box if they do not want to participate.
On the other hand, the countries with less than 28% of drivers agreeing to donate had an opt-in statement which read, “check the box below if you want to participate in the organ donor program”. Drivers in these countries were less likely to check the box, so they were not considered organ donors. Given this information, it may be possible for the US to minimize the difference between the amount of organs needed and the amount of organs donated by changing from an opt-in system to an opt-out system.