Ethics of Various Methods of Organ Donation for Transplantation
In the United States and around the world we are failing to meet the demand for organ transplants. In the U.S. there are well over 100,000 patients waiting for organs in order to save their lives but fewer than 15,000 donors become available per year [1]. This shortage has caused heated debates over the best system for organ donation for the purpose of transplantation. The primarily proposed solutions include expressed consent, presumed consent, and mandated choice. This shortage has also led to the development of a highly lucrative black market for organs which is plagued with unethical and dangerous practices [1]. This is not an issue that only touches certain groups or classes of people, it is an issue that can affect almost anyone, and as a result, it should be an issue that we all commit to addressing. After a practical and ethical review of each of the proposed systems, I will show why I have come to the conclusion that with certain supports in place the most ethical and practical solution is implementing a system of mandated choice.
In order to properly evaluate the best system for organ transplantation, it is important to understand the history of the procedure and what organ donation and transplantation actually look like. In 1954, doctors performed the first successful organ transplant of any organ using a kidney. In the 1960s organ transplant surgeries became consistently viable and since then there have been many technological advancements that have made it a truly life-saving procedure with the need for regulation [1]. Organs that have the potential to be harvested after death if viable include both kidneys, the liver, both lungs, the heart, the pancreas, the intestines, the hands and face, various tissues, the corneas of the eyes, and even in certain situations the limbs. Organs that can be donated while an individual is alive include one kidney, one lung, part of the liver, the pancreas, and the intestines. These can be donated because it is possible to survive without them, however, it is important to note that sometimes lifestyle changes are required after the removal [2]. Furthermore, there is a 5-10% risk of a surgical complication occurring and a 0.5-1% risk of death for a living donor depending on the specific procedure [3]. Even though organ donation, especially while one is still alive, is an extremely honorable action, it is important that individuals are properly educated on the risks they are taking on when they make that decision. The huge demand for this lifesaving procedure and the shortage of viable organs have created the perfect conditions for the extremely lucrative enterprise of organ trafficking to occur. There are two types of organ trafficking which are important to distinguish: the first one is human trafficking for the purpose of organ removal, and the second is organ, tissue, and cell (OTC) trafficking. Human trafficking for the purpose of organ removal is when an individual is transported and then their organs are removed. While OTC trafficking is the removal of someone's organs which are then transported and sold for transplant. In yearly revenue, the underground organ trade makes between $600 million and $1.2 billion. The organs used are generally sourced from donors in developing countries that are then bought by patients in wealthy nations like the United States. Frequently, donors in developing nations make the decision to sell their organs because they need to pay for necessities like food or shelter which makes them especially vulnerable. On the other hand, for many recipients of these illicit organs, the unsafe nature of receiving illicit medical care in a developing nation can end up making the benefits of the transplant obsolete with high rates of contraction of infectious diseases and rejection of the organs. Both patients and donors are coming from a place of extreme desperation to survive in one way or another. This need has created a prime situation for organ traffickers to take advantage of both parties and create an extremely profitable system [1]. In order to address this and end the abuse present it is necessary to pursue a more effective system of organ transplantation.
Since organ donation is a system that has so much potential for abuse of those in need it is important to centralize bioethical principles in the conversation. In order to do this it is imperative to understand the necessary terminology. The primary pillar that organ donation is founded on is altruism [3]. This is when an individual's actions are motivated by making a positive impact on others without regard for their own benefit [3]. Along with altruism, it is extremely important to discuss the bioethical principles of autonomy, beneficence, and nonmaleficence. Nonmaleficence means to do no harm and is especially important when it comes to living donor transplants because there is a substantial risk that the donor is undertaking [3]. Beneficence as it applies to bioethics is the obligation for healthcare professionals to do good. This includes the sharing of knowledge and resources in order to ensure that a patient is able to make a decision with proper knowledge of their options, also known as informed consent [3]. Autonomy has to do with the right to freely make decisions concerning oneself. When it comes to organ donation this is extremely important, especially in regard to individuals donating organs. Nobody or no situation should put anybody in a position where they feel like they have no other choice than to donate an organ. When dealing with vulnerable populations like in systems of organ transplant it requires the utmost prioritization of ethicality.
Now that there is a firm understanding of the problem, the procedure, and the ethical concerns that must be taken into account, an examination of each proposed system can be done. One of the proposed and most commonly practiced systems around the world, including the U.S., is expressed consent. An expressed consent system, also known as an opt-in system, relies entirely on altruistic donations from individuals who have indicated on an official form or in the presence of two adults their intention to donate after their death [1]. The primary benefit to an expressed consent model from an ethical standpoint is that it maintains the autonomy of potential donors by ensuring that every individual who donates actually wanted to donate because they took some form of official action to indicate this choice. However, in a more practical sense, a major drawback of this model is that it has proven to be extremely ineffective at meeting the demand for organs [4], which, as shown, can increase the demand for organs in the black market. This can actually create a potential counterargument to the ethicality of this system by raising the question that if a system is increasing the number of people turning to the unethical black market can it be an ethical system itself? While surveys show that a majority of citizens support organ donation, many often do not take the necessary action to become a donor and document their intention [4]. In fact, one poll found that 70% of the respondents indicated a desire to donate their organs but only 42% of Americans are registered donors and similarly in the UK only 39% of citizens are donors [5]. This causes the system to lose out on many potential organs continuing to contribute to the shortage. Some have even gone as far as to argue that US law about organ donation relies too heavily on altruism and will, therefore, worsens the shortage of organs [1].
An almost starkly opposing system is presumed consent. In this system, also known as an opt-out system, every individual is presumed to be an organ donor unless registered with a government database to express their opposition. A number of European countries have opt-out systems including Spain, France, Austria, Italy, and Norway. These countries that use this model have drastically higher percentages of citizens who are donors [1]. In all countries that practice this model, consent can only be presumed when it is determined that the donor was aware of the fact that not opting out meant they were deciding to donate their organs. As a result, a physician is only able to proceed with organ harvest after verifying that there is no documentation of a refusal either through the government or corroborating stories from multiple family members [7]. The primary objection to a presumed-consent policy is that some view it as a loss of autonomy because there is no affirmative choice by an individual to donate their organs. Many physicians and bioethicists view it as unethical to invade an individual's body without their expressed consent. In this model, it is incredibly possible for consent to be presumed of someone who was unaware of the need to opt out or was uneducated about the decision they were making, removing autonomous choice. Objectors to this model go on to argue that it is inherently worse to mistakenly remove someone's organs when that is against their wishes than not donate the organs of someone who wanted to because it is a blatant violation of primary ethical principles. However, those who support presumed consent respond to the argument of a loss of autonomy by countering that the model actually increases autonomy because it allows the donor instead of the family to make the final decision. Another argument in favor of presumed consent is that it is ethical because it provides the greatest good for the greatest number of people. Furthermore, some say that the burden of educating about presumed consent falls to those who object to donation rather than those who support it because the goal of donation and transplantation is overall morally good [4].
One extremely well-known model of the successful practice of presumed consent is in Spain. Out of any country in the world, Spain has the highest rate of organ donation with 33.5 per 1 million residents donating after death. Spain has developed an intense societal respect for organ donors which contributes to the success of the program. This policy is also extremely cost-effective because in the long run paying for a kidney transplant is cheaper than long-term dialysis. However, it is important to note that most countries that utilize a presumed consent model have universal healthcare or a combination of it with private care. This is significant because it means that all citizens are eligible to receive transplants while in a system; with entirely private health care only citizens who have insurance or money for the procedure would be eligible for transplants. While there are some countries that this model has worked well for, it is important to note that not all countries have experienced this same success. In the late 90s, Brazil adopted a policy of presumed consent but quickly repealed it because most doctors refused to harvest organs without expressed consent [4]. While the model of presumed consent is extremely effective at increasing the rate of organ donation it has many problems when it comes to respecting the autonomy of donors making it difficult to deem it a reliably ethical system.
Another system that is less common but addresses many of the flaws with the previous two models is mandated consent. In this system, it is required that all citizens, specifically adults, indicate their preferences for donation as a part of a required activity like filing taxes. One example of the use of a mandated choice model is in the state of Illinois where residents are required to designate their desire to donate or not in order to renew their driver's license. As of 2009, there was a signup rate of 60% compared to the national rate at that time of 38%. The primary ethical benefit of this system is that since it requires a clear choice to be made it enhances individual autonomy [1]. It ensures that a person's wishes would be honored whether they would like their organs donated or not. This is in line with the generally accepted view that individuals are more suited to make decisions about organ donation than their families [6]. Other advantages of this system include eliminating the barrier of family consent, increasing public awareness about organ donation as everyone would be forced to consider it, and would eliminate current delays resulting from getting family consent which would increase the viability of donated organs [6]. One ethical challenge that has been brought up about mandated choice is how it would be possible to ethically compel someone to make this choice. For example, if someone were to refuse to make this choice how could they be forced to do so in an ethical way? The answer seems fairly simple: if a decision about whether or not to be an organ donor becomes a required part of taxes or getting a driver’s license then not making a decision would mean you did not complete the required material. As a result, the individual would experience the consequences of that. This respects all central parts of bioethics including autonomy because respecting someone’s autonomy does not mean they do not have to comply with certain regulations, it means that they are able to make a choice. There are many other required decisions on tax forms like whether or not to donate to the Presidential Election Campaign Fund. Ultimately, a system of mandated choice would be the most ethical and effective at increasing the supply of organs for transplantation.
Systems of organ donation for the purpose of transplantation are highly dependent on the morality and central values of a society. As shown, there are countries that have been able to make each system work well enough and have it widely accepted by the general public. However, a system can be accepted by society and still be unethical or ineffective at achieving its goal. While an expressed consent model meets ethical standards it is grossly unable to meet the demand for organs. On the other hand, while a presumed consent model is extremely successful at meeting this demand, it brings up serious ethical questions about whether there is true respect for autonomy, especially in a country with an insufficient education system. The system of mandated choice is able to require an autonomous choice to be made in an ethical way while simultaneously increasing the number of donors and, therefore, the number of available organs for transplantation. While it may seem as if this is an issue that is out of the control of individuals, it is those individuals that the chosen system will most profoundly affect whether it is as a potential recipient, donor, or nondonor. As a result, it is imperative that citizens of the world evaluate both the effectiveness and ethicality of potential systems and advocate for the one that meets these standards best, which in my opinion is a model of mandated choice. This system could provide greater access to organs which can prolong the lives of so many people and allow them to live full lives and allow vulnerable populations of donors to be protected from abuse and effectively the robbery of their organs. The situation has reached a point of dire need. It requires that everyone take action through education and advocacy to ensure that as a world and individual nation there is protection for the most vulnerable and achievement of the highest standard of medical care possible.
References
1. Kelly, E. (2013, May 1). International organ Trafficking Crisis: Solutions Addressing the Heart of the Matter. Boston College Law Review, 1317-1349.
2. What Can Be Donated. (2021, September). Health Resources & Service Administration. Retrieved November 25, 2022, from https://www.organdonor.gov/learn/what-can-be-donated.
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https://journalofethics.ama-assn.org/article/presumed-vs-expressed-consent-us-and-intern ationally/2005-09#:~:text=Countries%20with%20presumed%20consent%20have%20gen erally%20seen%20higher,1986%2C%20donation%20rates%20fell%20by%2050%20perc ent%20%5B3%5D.
5. Goldman, R. (2012, May 1). States See Instant Spike in Organ Donors Following Facebook Push. ABC News. Retrieved November 25, 2022, from
https://abcnews.go.com/Health/states-instant-spike-organ-donors-facebook-push/story?id =16255979#:~:text=More%20than%20112%2C000%20Americans%20are%20awaiting %20organs%2C%20and,support%20donation%2C%20only%2042%20percent%20are%2 0registered%20donors.
6. Spital, A. (1997, March 27). Mandated Choice For Organ Donation. Official Journal of Transplantation. Retrieved November 15, 2022, from
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7. Presumed Consent & Mandated Choice for Organs from Deceased Donors. (n.d.). AMA Code of Medical Ethics. Retrieved November 15, 2022, from
https://code-medical-ethics.ama-assn.org/ethics-opinions/presumed-consent-mandated-ch oice-organs-deceased-donors.