Organ donation is when a person allows an organ of theirs to be removed, legally, either by consent while the donor is alive or after death with the assent of the next of kin.
Donation may be for research, or, more commonly healthy transplantable organs and tissues may be donated to be transplanted into another person.
Common transplantations include: kidneys, heart, liver, pancreas, intestines, lungs, bones, bone marrow, skin, and corneas. Some organs and tissues can be donated by living donors, such as a kidney or part of the liver, part of the pancreas, part of the lungs or part of the intestines, but most donations occur after the donor has died.
As of February 2, 2018, there were 115,085 people waiting for life-saving organ transplants in the US. Of these, 74,897 people were active candidates waiting for a donor. While views of organ donation are positive there is a large gap between the numbers of registered donors compared to those awaiting organ donations on a global level.
Organ donors are usually dead at the time of donation, but may be living. For living donors, organ donation typically involves extensive testing before the donation, including psychological evaluation to determine whether the would-be donor understands and consents to the donation. On the day of the donation, the donor and the recipient arrive at the hospital, just like they would for any other major surgery.
For dead donors, the process begins with verifying that the person is hopelessly dead, determining whether any organs could be donated, and obtaining consent for the donation of any usable organs. Normally, nothing is done until the person has already died, although if death is inevitable, it is possible to check for consent and to do some simple medical tests shortly beforehand, to help find a matching recipient. The verification of death is normally done by a neurologist (a physician specializing in brain function) that is not involved in the previous attempts to save the patient's life. This physician has nothing to do with the transplantation process. Verification of death is often done multiple times, to prevent doctors from overlooking any remaining sign of life, however small. After death, the hospital may keep the body on a mechanical ventilator and use other methods to keep the organs in good condition. Donors and their families are not charged for any expenses related to the donation.
The surgical process depends upon which organs are being donated. After the surgeons remove the organs, they are transported as quickly as possible to the recipient, for immediate transplantation. Most organs only survive outside the body for a few hours, so recipients in the same region are usually chosen. In the case of a dead donor, after the organs are removed, the body is normally restored to as normal an appearance as possible, so that the family can proceed with funeral rites and either cremation or burial.
Further information: List of organ transplant donors and recipients
The first living organ donor in a successful transplant was Ronald Lee Herrick (1931–2010), who donated a kidney to his identical twin brother in 1954. The lead surgeon, Joseph Murray, won the Nobel Prize in Physiology or Medicine in 1990 for advances in organ transplantation.
The youngest organ donor was a baby with anencephaly, born in 2015, who lived for only 100 minutes and donated his kidneys to an adult with renal failure. The oldest known organ donor was a 107-year-old Scottish woman, whose corneas were donated after her death in 2016. The oldest known organ donor for an internal organ was a 92-year-old Texas man, whose family chose to donate his liver after he died of a brain hemorrhage.
The oldest altruistic living organ donor was an 85-year-old woman in Britain, who donated her kidney to a stranger in 2014 after hearing how many people needed to receive a transplant.
Researchers were able to develop a novel way to transplant human fetal kidneys into anephric rats to overcome a significant obstacle in impeding human fetal organ transplantations. The human fetal kidneys demonstrated both growth and function within the rats.
Because there are no known cures for many brain disorders, a high priority is given to research designed to improve the scientific understanding of healthy brain tissue to try to find new treatments. This is to ensure research is thorough, as it is important to have access to brain tissues from people who did not have the diseases being studied for comparison. These unaffected tissues are known as ‘control tissues’. a short A BBB video appeal was published in early 2017
Legislation and global perspectives
The laws of different countries allow potential donors to permit or refuse donation, or give this choice to relatives. The frequency of donations varies among countries.
The term consent is typically defined as a subject adhering to an agreement of principals and regulations; however, the definition becomes difficult to execute concerning the topic of organ donation, mainly because the subject is incapable of consent due to death or mental impairment. There are two types of consent being reviewed; explicit consent and presumed consent. Explicit consent consists of the donor giving direct consent through proper registration depending on the country. The second consent process is presumed consent, which does not need direct consent from the donor or the next of kin. Presumed consent assumes that donation would have been permitted by the potential donor if permission was pursued. Of possible donors an estimated twenty-five percent of families refuse to donate a loved one's organs. Consent is defined as adhering to an agreement of principals. However, this definition is hard to enforce in accordance with organ donation because, in most cases, organs are donated from the deceased, and can no longer provide consent for themselves.
Opt-in versus opt-out
See also: Mandated choice
As medical science advances, the number of people who could be helped by organ donors increases continuously. As opportunities to save lives increase with new technologies and procedures, the number of people willing to donate organs needs to increase as well. In order to respect individual autonomy, voluntary consent must be determined for the individual's disposition of their remains following death. There are two main methods for determining voluntary consent: "opt in" (only those who have given explicit consent are donors) and "opt out" (anyone who has not refused consent to donate is a donor). In terms of an opt-out or presumed consent system, it is assumed that individuals do intend to donate their organs to medical use when they expire. Opt-out legislative systems dramatically increase effective rates of consent for donation as a consequence of the default effect. For example, Germany, which uses an opt-in system, has an organ donation consent rate of 12% among its population, while Austria, a country with a very similar culture and economic development, but which uses an opt-out system, has a consent rate of 99.98%.
Opt-out consent, otherwise known as "deemed" consent, support refers to the notion that the majority of people support organ donation, but only a small percentage of the population are actually registered, because they fail to go through the actual step of registration, even if they want to donate their organs at the time of death. This could be resolved with an opt-out system, where many more people would be registered as donors when only those who object consent to donation have to register to be on the non-donation list. For this reasons, countries, such as Wales, have adopted a "soft opt-out" consent, meaning if a citizen has not clearly made a decision to register, then they will be treated as a registered citizen and participate in the organ donation process. Likewise, opt-in consent refers to the consent process of only those who are registered to participate in organ donation. Currently, the United States has an opt-in system, but studies show that countries with an opt-out system save more lives due to more availability of donated organs. The current opt-in consent policy assumes that individuals are not willing to become organ donors at the time of their death, unless they have documented otherwise through organ donation registration. Registering to become an organ donor heavily depends on the attitude of the individual; those with a positive outlook might feel a sense of altruism towards organ donation, while others may have a more negative perspective, such as not trusting doctors to work as hard to save the lives of registered organ donors. Some common concerns regarding a presumed consent ("opt-out") system are sociologic fears of a new system, moral objection, sentimentality, and worries of the management of the objection registry for those who do decide to opt-out of donation. Additional concerns exist with views of compromising the freedom of choice to donate  and conflicts with religious beliefs which exist. Even though concerns exist, the United States still has a 95 percent organ donation approval rate. This level of nationwide acceptance may foster an environment where moving to a policy of presumed consent may help solve some of the organ shortage problem, where individuals are assumed to be willing organ donors unless they document a desire to "opt-out", which must be respected.
Because of public policies, cultural, infrastructural and other factors, presumed consent or opt-out models do not always translate directly into increased effective rates of donation. The United Kingdom has several different laws and policies for the organ donation process, such as consent of a witness or guardian must be provided to participate in organ donation. This policy is currently being consulted on by Department of Health and Social Care. In terms of effective organ donations, in some systems like Australia (14.9 donors per million, 337 donors in 2011), family members are required to give consent or refusal, or may veto a potential recovery even if the donor has consented. Some countries with an opt-out system like Spain (36 effective donors per million inhabitants) or Austria (21 donors/million) have high donor rates and some countries with opt-in systems like Germany (16 donors/million) or Greece (6 donors/million) have lower effective donation rates. The president of the Spanish National Transplant Organisation has acknowledged Spain's legislative approach is likely not the primary reason for the country's success in increasing the donor rates, starting in the 1990s. Looking to the example of Spain, which has successfully adopted the presumed consent donation system, intensive care units (ICUs) must be equipped with enough doctors to maximize the recognition of potential donors and maintain organs while families are consulted for donation. The characteristic that enables the Spanish presumed consent model to be successful is the resource of transplant coordinators; it is recommended to have at least one at each hospital where opt-out donation is practiced to authorize organ procurement efficiently.
Public views are crucial to the success of opt-out or presumed consent donation systems. In a study done to determine if health policy change to a presumed consent or opt-out system would help to increase donors, an increase of 20 to 30 percent was seen among countries who changed their policies from some type of opt-in system to an opt-out system. Of course, this increase must have a great deal to do with the health policy change, but also may be influenced by other factors that could have impacted donor increases.
Transplant Priority for Willing Donors is a newer method and the first to incorporate a "non-medical" criteria into the priority system to encourage higher donation rates in the opt-in system. Initially implemented in Israel, it allows an individual in need of an organ to move up the recipient list. Moving up the list is contingent on the individual opting-in prior to their need for an organ donation. The policy applies nonmedical criteria when allowing the individual who has previously registered as an organ donor, or family has previously donated an organ, priority over another possible recipient. It must be determined that both recipients have identical medical needs prior to moving a recipient up the list. While incentives like this in the opt-in system do help raise donation rates, they are not as successful in doing so as the opt-out, presumed consent default policies for donation.
On 30 November 2005, the Congress introduced an opt-out policy on organ donation, where all people over 18 years of age will be organ donors unless they or their family state their negative. The law was promulgated on December 22, 2005 as "National Law 26,066".
A campaign by Sport Club Recife has led to waiting lists for organs in north-east Brazil to drop almost to zero; while according to the Brazilian law the family has the ultimate authority, the issuance of the organ donation card and the ensuing discussions have however eased the process.
On 6 January 2010 the "Law 20,413" was promulgated, introducing an opt-out policy on organ donation, where all people over 18 years of age will be organ donors unless they state their negative.
On 4 August 2016, the Congress passed the "Law 1805", which introduced an opt-out policy on organ donation where all people will be organ donors unless they state their negative. The law came into force on 4 February 2017.
Within the European Union, organ donation is regulated by member states. As of 2010, 24 European countries have some form of presumed consent (opt-out) system, with the most prominent and limited opt-out systems in Spain, Austria, and Belgium yielding high donor rates. In England organ donation is voluntary and no consent is presumed. Individuals who wish to donate their organs after death can use the Organ Donation Register, a national database. The government of Wales became the first constituent country in the UK to adopt presumed consent in July 2013. The opt-out organ donation scheme in Wales went live on December 1, 2015 and is expected to increase the amount of donors by 25%. In 2008, the UK discussed whether to switch to an opt-out system in light of the success in other countries and a severe British organ donor shortfall. In Italy if the deceased neither allowed nor refused donation while alive, relatives will pick the decision on his or her behalf despite a 1999 act that provided for a proper opt-out system. In 2008, the European Parliament overwhelmingly voted for an initiative to introduce an EU organ donor card in order to foster organ donation in Europe.
Landstuhl Regional Medical Center (LRMC) has become one of the most active organ donor hospitals in all of Germany, which otherwise has one of the lowest organ donation participation rates in the Eurotransplant organ network. LRMC, the largest U.S. military hospital outside the United States, is one of the top hospitals for organ donation in the Rhineland-Palatinate state of Germany, even though it has relatively few beds compared to many German hospitals. According to the German organ transplantation organization, Deutsche Stiftung Organtransplantation (DSO), 34 American military service members who died at LRMC (roughly half of the total number who died there) donated a total of 142 organs between 2005 and 2010. In 2010 alone, 10 of the 12 American service members who died at LRMC were donors, donating a total of 45 organs. Of the 205 hospitals in the DSO's central region—which includes the large cities of Frankfurt and Mainz—only six had more organ donors than LRMC in 2010.
Scotland conforms to the Human Tissue Authority Code of Practice, which grants authority to donate organs, instead of consent of the individual. This helps to avoid conflict of implications and contains several requirements. In order to participate in organ donation, one must be listed on the Organ Donor Registry (ODR). If the subject is incapable of providing consent, and is not on the ODR, then an acting representative, such as a legal guardian or family member can give legal consent for organ donation of the subject, along with a presiding witness, according to the Human Tissue Authority Code of Practice. Consent or refusal from a spouse, family member, or relative is necessary for a subject is incapable.
Austria participates in the "opt-out" consent process, and have laws that make organ donation the default option at the time of death. In this case, citizens must explicitly "opt out" of organ donation. "In these so-called opt-out countries, more than 90% of people donate their organs. Yet in countries such as U.S. and Germany, people must explicitly "opt in" if they want to donate their organs when they die. In these opt-in countries, fewer than 15% of people donate their organs at death."
In May 2017, Ireland began the process of introducing an "opt-out" system for organ donation. Minister for Health, Simon Harris, outlined his expectations to have the Human Tissue Bill passed by the end of 2017. This bill would put in place the system of "presumed consent".
The Mental Capacity Act is another legal policy in place for organ donation in the UK. The act is used by medical professionals to declare a patients mental capacity. The act claims that medical professionals are to "act in a patient's best interest", when the patient is unable to do so.
India has a fairly well developed corneal donation programme; however, donation after brain death has been relatively slow to take off. Most of the transplants done in India are living related or unrelated transplants. To curb organ commerce and promote donation after brain death the government enacted a law called "The Transplantation of Human Organs Act" in 1994 that brought about a significant change in the organ donation and transplantation scene in India.  Many Indian states have adopted the law and in 2011 further amendment of the law took place. Despite the law there have been stray instances of organ trade in India and these have been widely reported in the press. This resulted in the amendment of the law further in 2011. Deceased donation after brain death have slowly started happening in India and 2012 was the best year for the programme.
|State||No. of Deceased Donors||Total no. of Organs Retrieved||Organ Donation Rate per Million Population|
The year 2013 has been the best yet for deceased organ donation in India. A total of 845 organs were retrieved from 310 multi-organ donors resulting in a national organ donation rate of 0.26 per million population(Table 2).
|State||Tamil Nadu||Andhra Pradesh||Kerala||Maharashtra||Delhi||Gujarat||Karnataka||Puducherry||Total (National)|
|* ODR (pmp)||1.80||0.47||1.05||0.31||1.61||0.41||0.29||1.6||0.26|
* ODR (pmp) – Organ Donation Rate (per million population)
In the year 2000 through the efforts of an NGO called MOHAN Foundation state of Tamil Nadu started an organ sharing network between a few hospitals. This NGO also set up similar sharing network in the state of Andhra Pradesh and these two states were at the forefront of deceased donation and transplantation programme for many years. As a result, retrieval of 1033 organs and tissues were facilitated in these two states by the NGO. Similar sharing networks came up in the states of Maharashtra and Karnataka; however, the numbers of deceased donation happening in these states were not sufficient to make much impact.In 2008, the Government of Tamil Nadu put together government orders laying down procedures and guidelines for deceased organ donation and transplantation in the state. These brought in almost thirty hospitals in the programme and has resulted in significant increase in the donation rate in the state. With an organ donation rate of 1.15 per million population, Tamil Nadu is the leader in deceased organ donation in the country. The small success of Tamil Nadu model has been possible due to the coming together of both government and private hospitals, NGOs and the State Health department. Most of the deceased donation programmes have been developed in southern states of India. The various such programmes are as follows-
- Andhra Pradesh - Jeevandan programme
- Karnataka – Zonal Coordination Committee of Karnataka for Transplantation
- Kerala – Mrithasanjeevani – The Kerala Network for Organ Sharing
- Maharashtra – Zonal Transplant Coordination Center in Mumbai
- Rajasthan – Navjeevan - The Rajasthan Network of Organ Sharing
- Tamil Nadu – Cadaver Transplant Programme
In the year 2012 besides Tamil Nadu other southern states too did deceased donation transplants more frequently. An online organ sharing registry for deceased donation and transplantation is used by the states of Tamil Nadu and Kerala. Both these registries have been developed, implemented and maintained by MOHAN Foundation. However. National Organ and Tissue Transplant Organization (NOTTO) is a National level organization set up under Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India and only official organization.
Organ selling is legally banned in Asia. Numerous studies have documented that organ vendors have a poor quality of life (QOL) following kidney donation. However, a study done by Vemuru reddy et al shows a significant improvement in Quality of life contrary to the earlier belief. Live related renal donors have a significant improvement in the QOL following renal donation using the WHO QOL BREF in a study done at the All India Institute of Medical Sciences from 2006 to 2008. The quality of life of the donor was poor when the graft was lost or the recipient died.
Only one country, Iran has eliminated the shortage of transplant organs – and only Iran has a working and legal payment system for organ donation.  It is also the only country where organ trade is legal. The way their system works is, if a patient does not have a living relative or who are not assigned an organ from a deceased donor, apply to the nonprofit Dialysis and Transplant Patients Association (Datpa). The association establishes potential donors, those donors are assessed by transplant doctors who are not affiliated with the Datpa association. The government gives a compensation of $1,200 to the donors and aid them a year of limited health-insurance. Additionally, working through Datpa, kidney recipients pay donors between $2,300 and $4,500. Importantly, it is illegal for the medical and surgical teams involved or any ‘middleman’ to receive payment. Charity donations are made to those donors whose recipients are unable to pay. The Iranian system began in 1988 and eliminated the shortage of kidneys by 1999. Within the first year of the establishment of this system, the number of transplants had almost doubled; nearly four fifths were from living unrelated sources. Nobel Laureate economist Gary Becker and Julio Elias estimated that a payment of $15,000 for living donors would alleviate the shortage of kidneys in the U.S.
See also: Organ transplantation in Israel
Since 2008, signing an organ donor card in Israel has provided a potential medical benefit to the signer. If two patients require an organ donation and have the same medical need, preference will be given to the one that had signed an organ donation card. This policy was nicknamed "dont give, don't get". Organ donation in Israel increased after 2008.
See also: Organ transplantation in Japan
The rate of organ donation in Japan is significantly lower than in Western countries. This is attributed to cultural reasons, some distrust of western medicine, and a controversial organ transplantation in 1968 that provoked a ban on cadaveric organ donation that would last thirty years. Organ donation in Japan is regulated by a 1997 organ transplant law, which defines "brain death" and legalized organ procurement from brain dead donors.
New Zealand law allows live donors to participate in altruistic organ donation only. In 2013 there were 3 cases of liver donation by live donors and 58 cases of kidney donation by live donors. New Zealand has low rates of live donation, which could be due to the fact that it is illegal to pay someone for their organs. The Human Tissue Act 2008 states that trading in human tissue is prohibited, and is punishable by a fine of up to $50,000 or a prison term of up to 1 year.
New Zealand law also allows for organ donation from deceased individuals. In 2013 organs were taken from 36 deceased individuals. Everyone who applies for a driver's licence in New Zealand indicates whether or not they wish to be a donor if they die in circumstances that would allow for donation. The question is required to be answered for the application to be processed, meaning that the individual must answer yes or no, and does not have the option of leaving it unanswered. However, the answer given on the drivers license does not constitute informed consent, because at the time of drivers license application not all individuals are equipped to make an informed decision regarding whether to be a donor, and it is therefore not the deciding factor in whether donation is carried out or not. It is there to simply give indication of the person's wishes. Family must agree to the procedure for donation to take place.
A 2006 bill proposed setting up an organ donation register where people can give informed consent to organ donations and clearly state their legally binding wishes. However, the bill did not pass, and there was condemnation of the bill from some doctors, who said that even if a person had given express consent for organ donation to take place, they would not carry out the procedure in the presence of any disagreement from grieving family members.
The indigenous population of New Zealand also have strong views regarding organ donation. Many Maori people believe organ donation is morally unacceptable due to the cultural need for a dead body to remain fully intact. However, because there is not a universally recognised cultural authority, no one view on organ donation is universally accepted in the Maori population. They are, however, less likely to accept a kidney transplant than other New Zealanders, despite being overrepresented in the population receiving dialysis.
Organ donation in Sri Lanka was ratified by the Human Tissue Transplantation Act No. 48 of 1987. Sri Lanka Eye Donation Society, a non-governmental organization established in 1961 has provided over 60,000 corneas for corneal transplantation, for patients in 57 countries. It is one of the major suppliers of human eyes to the world, with a supply of approximately 3,000 corneas per year.
Over 121,000 people in need of an organ are on the U.S. government waiting list. This crisis within the United States is growing rapidly because on average there are only 30,000 transplants performed each year. More than 8,000 people die each year from lack of a donor organ, an average of 22 people a day. Between the years 1988 and 2006 the number of transplants doubled, but the number of patients waiting for an organ grew six times as large. It has been estimated that the number of organs donated would double if every person with suitable organs decided to donate. In the past presumed consent was urged to try to decrease the need for organs. The Uniform Anatomical Gift Act of 1987 was adopted in several states, and allowed medical examiners to determine if organs and tissues of cadavers could be donated. By the 1980s, several states adopted different laws that allowed only certain tissues or organs to be retrieved and donated, some allowed all, and some did not allow any without consent of the family. In 2006 when the UAGA was revised, the idea of presumed consent was abandoned. In the United States today, organ donation is done only with consent of the family or donator themselves. According to economist Alex Tabarrok, the shortage of organs has increased the use of so-called expanded criteria organs, or organs that used to be considered unsuitable for transplant. Five patients that received kidney transplants at the University of Maryland School of Medicine developed cancerous or benign tumors which had to be removed. The head surgeon, Dr. Michael Phelan, explained that "the ongoing shortage of organs from deceased donors, and the high risk of dying while waiting for a transplant, prompted five donors and recipients to push ahead with the surgery." Several organizations such as the American Kidney Fund are pushing for opt-out organ donation in the United States.
Donor Leave Laws
In addition to their sick and annual leave, federal executive agency employees are entitled to 30 days paid leave for organ donation. Thirty-two states (excluding only Alabama, Connecticut, Florida, Kentucky, Maine, Michigan, Montana, Nebraska, Nevada, New Hampshire, New Jersey, North Carolina, Pennsylvania, Rhode Island, South Dakota, Tennessee, Vermont, and Wyoming) and the District of Columbia also offer paid leave for state employees. Five states (California, Hawaii, Louisiana, Minnesota, and Oregon) require certain private employers to provide paid leave for employees for organ or bone marrow donation, and seven others (Arkansas, Connecticut, Maine, Nebraska, New York, South Carolina, and West Virginia) either require employers to provide unpaid leave, or encourage employers to provide leave, for organ or bone marrow donation.
A bill pending in the US House of Representatives, the Living Donor Protection Act of 2016, would amend the Family and Medical Leave Act of 1993 to provide leave under the act for an organ donor. If successful, this new law would permit "eligible employee" organ donors to receive up to 12 work weeks of leave in a 12-month period.
Nineteen US states and the District of Columbia provide tax incentives for organ donation. The most generous state tax incentive is Utah's tax credit, which covers up to $10,000 of unreimbursed expenses (travel, lodging, lost wages, and medical expenses) associated with organ or tissue donation.Idaho (up to $5,000 of unreimbursed expenses) and Louisiana (up to $7,500 of 72% of unreimbursed expenses) also provide donor tax credits.Arkansas, the District of Columbia, Louisiana and Pennsylvania provide tax credits to employers for wages paid to employees on leave for organ donation. Thirteen states (Arkansas, Georgia, Iowa, Massachusetts, Mississippi, New Mexico, New York, North Dakota, Ohio, Oklahoma, Rhode Island and Wisconsin) have a tax deduction for up to $10,000 of unreimbursed costs, and Kansas and Virginia offer a tax deduction for up to $5,000 of unreimbursed costs.
States have focused their tax incentives on unreimbursed costs associated with organ donation to ensure compliance with the National Organ Transplant Act of 1984. NOTA prohibits, "any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation." However, NOTA exempts, "the expenses of travel, housing, and lost wages incurred by the donor of a human organ in connection with the donation of the organ," from its definition of "valuable consideration."
While offering income tax deductions has been the preferred method of providing tax incentives, some commentators have expressed concern that these incentives provide disproportionate benefits to wealthier donors. Tax credits, on the other hand, are perceived as more equitable since the after tax benefit of the incentive is not tied to the marginal tax rate of the donor. Additional tax favored approaches have been proposed for organ donation, including providing: tax credits to the families of deceased donors (seeking to encourage consent), refundable tax credits (similar to the earned income credit) to provide greater tax equity among potential donors, and charitable deductions for the donation of blood or organs.
Other financial incentives
As stated above, under the National Organ Transplant Act of 1984, granting monetary incentives for organ donation is illegal in the United States. However, there has been some discussion about providing fixed payment for potential live donors. In 1988, regulated paid organ donation was instituted in Iran and, as a result, the renal transplant waiting list was eliminated. Critics of paid organ donation argue that the poor and vulnerable become susceptible to transplant tourism. Travel for transplantation becomes transplant tourism if the movement of organs, donors, recipients or transplant professionals occurs across borders and involves organ trafficking or transplant commercialism. Poor and underserved populations in underdeveloped countries are especially vulnerable to the negative consequences of transplant tourism because they have become a major source of organs for the 'transplant tourists' that can afford to travel and purchase organs.
In 1994 a law was passed in Pennsylvania which proposed to pay $300 for room and board and $3,000 for funeral expenses to an organ donor's family. Developing the program was an eight-year process; it is the first of its kind. Procurement directors and surgeons across the nation await the outcomes of Pennsylvania's program. There have been at least nineteen families that have signed up for the benefit. Due to investigation of the program, however, there has been some concern whether the money collected is being used to assist families. Some organizations, such as the National Kidney Foundation, oppose financial incentives associated with organ donation claiming, "Offering direct or indirect economic benefits in exchange for organ donation is inconsistent with our values as a society." One argument is it will disproportionately affect the poor. The $300–3,000 reward may act as an incentive for poorer individuals, as opposed to the wealthy who may not find the offered incentives significant. The National Kidney Foundation has noted that financial incentives, such as this Pennsylvania statute, diminish human dignity.
Deontological issues are issues about whether a person has an ethical duty or responsibility to take an action. Nearly all scholars and societies around the world agree that voluntarily donating organs to sick people is ethically permissible. Although nearly all scholars encourage organ donation, fewer scholars believe that all people are ethically required to donate their organs after death. Similarly, nearly all religions support voluntary organ donation as a charitable act of great benefit to the community, although a few small groups, like the Roma (gypsies), oppose organ donation on religious grounds. Issues surrounding patient autonomy, living wills, and guardianship make it nearly impossible for involuntary organ donation to occur.
From the standpoint of deontological ethics, the primary issues surrounding the morality of organ donation are semantic in nature. The debate over the definitions of life, death, human, and body is ongoing. For example, whether or not a brain-dead patient ought to be kept artificially animate in order to preserve organs for donation is an ongoing problem in clinical bioethics. In addition, some have argued that organ donation constitutes an act of self-harm, even when an organ is donated willingly.
Further, the use of cloning to produce organs with a genotype identical to the recipient is a controversial topic, especially considering the possibility for an entire person to be brought into being for the express purpose of being destroyed for organ procurement. While the benefit of such a cloned organ would be a zero-percent chance of transplant rejection, the ethical issues involved with creating and killing a clone may outweigh these benefits. However, it may be possible in the future to use cloned stem-cells to grow a new organ without creating a new human being.
A relatively new field of transplantation has reinvigorated the debate. Xenotransplantation, or the transfer of animal (usually pig) organs into human bodies, promises to eliminate many of the ethical issues, while creating many of its own. While xenotransplantation promises to increase the supply of organs considerably, the threat of organ transplant rejection and the risk of xenozoonosis, coupled with general anathema to the idea, decreases the functionality of the technique. Some animal rights groups oppose the sacrifice of an animal for organ donation and have launched campaigns to ban them.
On teleological or utilitarian grounds, the moral status of "black market organ donation" relies upon the ends, rather than the means. In so far as those who donate organs are often impoverished and those who can afford black market organs are typically well-off, it would appear that there is an imbalance in the trade. In many cases, those in need of organs are put on waiting lists for legal organs for indeterminate lengths of time — many die while still on a waiting list.
Organ donation is fast becoming an important bioethical issue from a social perspective as well. While most first-world nations have a legal system of oversight for organ transplantation, the fact remains that demand far outstrips supply. Consequently, there has arisen a black market trend often referred to as transplant tourism. The issues are weighty and controversial. On the one hand are those who contend that those who can afford to buy organs are exploiting those who are desperate enough to sell their organs. Many suggest this results in a growing inequality of status between the rich and the poor. On the other hand, are those who contend that the desperate should be allowed to sell their organs and that preventing them from doing so is merely contributing to their status as impoverished. Further, those in favor of the trade hold that exploitation is morally preferable to death, and in so far as the choice lies between abstract notions of justice on the one hand and a dying person whose life could be saved on the other hand, the organ trade should be legalized. Conversely, surveys conducted among living donors postoperatively and in a period of five years following the procedure have shown extreme regret in a majority of the donors, who said that given the chance to repeat the procedure, they would not. Additionally, many study participants reported a decided worsening of economic condition following the procedure. These studies looked only at people who sold a kidney in countries where organ sales are already legal.
A consequence of the black market for organs has been a number of cases and suspected cases of organ theft, including murder for the purposes of organ theft. Proponents of a legal market for organs say that the black-market nature of the current trade allows such tragedies and that regulation of the market could prevent them. Opponents say that such a market would encourage criminals by making it easier for them to claim that their stolen organs were legal.
Legalization of the organ trade carries with it its own sense of justice as well. Continuing black-market trade creates further disparity on the demand side: only the rich can afford such organs. Legalization of the international organ trade could lead to increased supply, lowering prices so that persons outside the wealthiest segments could afford such organs as well.
Exploitation arguments generally come from two main areas:
- Physical exploitation suggests that the operations in question are quite risky, and, taking place in third-world hospitals or "back-alleys", even more risky. Yet, if the operations in question can be made safe, there is little threat to the donor.
- Financial exploitation suggests that the donor (especially in the Indian subcontinent and Africa) are not paid enough. Commonly, accounts from persons who have sold organs in both legal and black market circumstances put the prices at between $150 and $5,000, depending on the local laws, supply of ready donors and scope of the transplant operation. In Chennai, India where one of the largest black markets for organs is known to exist, studies have placed the average sale price at little over $1,000. Many accounts also exist of donors being postoperatively denied their promised pay.
The New Cannibalism is a phrase coined by anthropologist Nancy Scheper-Hughes in 1998 for an article written for The New Internationalist. Her argument was that the actual exploitation is an ethical failing, a human exploitation; a perception of the poor as organ sources which may be used to extend the lives of the wealthy.
Economic drivers leading to increased donation are not limited to areas such as India and Africa, but also are emerging in the United States. Increasing funeral expenses combined with decreasing real value of investments such as homes and retirement savings which took place in the 2000s have purportedly led to an increase in citizens taking advantage of arrangements where funeral costs are reduced or eliminated.
Brain death versus cardiac death
Brain death may result in legal death, but still with the heart beating, and with mechanical ventilation, all other vital organs may be kept alive and functional for a certain period of time. Given long enough, patients who do not fully die, in the complete biological sense, but who are declared brain dead will usually, either after a shorter or longer interval, depending upon the patient's case and the type and extent of trauma and their age and prior health, start to build up toxins and wastes in the body, and the organs (especially sensitive ones like the brain, nerves, heart, blood vessels, lungs, liver, intestines, and kidneys) eventually can dysfunction, have coagulopathies or fluid and electrolyte and nutrient imbalances, or even fail- partially, or completely and irreversibly. Thus, the organs will usually only be sustainable and viable for acceptable use up until a certain length of time (most organs that are transplanted fortunately have widely used and agreed upon parameters, that are measurable and reliable, when determining their welfare and level of function). This will depend on how well the patient is maintained, any other comorbidities, the skill of the medical, nursing, and surgical teams, and the quality of the care and the facilities- and once removed, the time and the mode of transport and how smoothly the transplant procedure (and the care before, during, and after the operation[s]), goes.[unreliable medical source?] Given optimal care and oversight, and with the person's (through a directive or driver's license) and/or guardian or next of kin or power of attorney's informed consent, certain cases can provide optimal opportunities for organ transplantation. A major point of contention is whether transplantation should be allowed at all if the patient is not yet fully (biologically) dead, and if brain death is acceptable, whether the person's whole brain needs to have died, or if the death of a part of the brain (i.e., the cerebrum- which makes us human in our intellectual, and indeed all, conscious capacities; or the brain stem- which controls vital organic functions needed for life, like breathing and precise heartbeat regulation) is enough for legal and ethical and moral purposes.
Most organ donation for organ transplantation is done in the setting of brain death. However, in Japan this is a fraught point, and prospective donors may designate either brain death or cardiac death – see organ transplantation in Japan. In some nations (for instance, Belgium, Poland, Portugal, Spain and France) everyone is automatically an organ donor, although some jurisdictions (such as Singapore, Portugal, Poland, New Zealand, or Netherlands) allow opting out of the system. Elsewhere, consent from family members or next-of-kin is required for organ donation. The non-living donor is kept on ventilator support until the organs have been surgically removed. If a brain-dead individual is not an organ donor, ventilator and drug support is discontinued and cardiac death is allowed to occur.
In the United States, where since the 1980s the Uniform Determination of Death Act has defined death as the irreversible cessation of the function of either the brain or the heart and lungs, the 21st century has seen an order-of-magnitude increase of donation following cardiac death. In 1995, only one out of 100 dead donors in the nation gave their organs following the declaration of cardiac death. That figure grew to almost 11 percent in 2008, according to the Scientific Registry of Transplant Recipients. That increase has provoked ethical concerns about the interpretation of "irreversible" since "patients may still be alive five or even 10 minutes after cardiac arrest because, theoretically, their hearts could be restarted, [and thus are] clearly not dead because their condition was reversible."
There are also controversial issues regarding how organs are allocated to recipients.[clarify] For example, some believe that livers should not be given to alcoholics in danger of reversion, while others view alcoholism as a medical condition like diabetes.
1. Organ Retrieval from the Dead
The dead are the major sources of organs for transplantation. For a long time deceased donors came from those declared brain dead, that is, those who have irreversibly lost their brain function. In recent years, however, many donors have come from those who have died in the sense of circulatory death. Both donation after brain death and donation after circulatory death invite the important philosophical—not just medical—question “what is it to be dead”? (See the entry on the definition of death.)
Even though far more people die than require new organs, organs are scarce. Numerous factors affect the retrieval of organs from the dead. These include: the nature of people’s deaths (in only perhaps fewer than 1% of deaths can organs currently be taken, and countries vary according to the number of strokes, car crashes, shootings, and other causes of death that lend themselves to retrieval); the number of intensive care units (ICUs) (most donors die there and fewer ICUs makes for fewer donors); the medical factors that determine whether organs are retrieved successfully; the logistical factors that determine the efficient use of available organs; the extent of public awareness of transplantation; and the ethical-legal rules for consent that determine who is allowed to block or permit retrieval. Although most of these factors do not raise philosophical questions, it is important to realize that the main factor that does—the ethical-legal system for consent—is only one of many that affect retrieval rates, and nowhere near the most important at that. One should also bear in mind that the variety of factors plus unreliability or incomparability in statistics about retrieval mean that it is hard or impossible to have confidence in many of the causal claims about how consent rules affect retrieval rates.
This section explains the rules for consent as they operate in practice in most countries. It then outlines certain reform proposals, mentions the claims of the main affected parties, and, in the light of those claims, evaluates those reform proposals.
1.1 Organ retrieval in practice
In nearly all countries with a transplantation program, the following is a broadly accurate description of organ retrieval in practice, although different countries, and regions of countries, do differ in nuanced ways, for instance in how the option of donation is presented to families; and the nuances may affect retrieval rates (Price 2000; T.M. Wilkinson 2011).
- If the deceased made a refusal known, either formally (e.g., on a register) or informally, organs will not be retrieved.
- If the family refuses, organs will not be retrieved.
- If the deceased is not known to have refused, suitable organs will be retrieved if the family agrees (some jurisdictions) or does not refuse (other jurisdictions).
The first point to make from this description is that nearly all countries have, in practice, a “double veto” system. Even if the family wants to donate, the deceased’s objection will veto retrieval. Even if the deceased agreed to donate, the family’s objection will veto retrieval. (The U.S. has partial exceptions discussed shortly.) The family’s veto is in many countries, such as the U.S., the U.K., and most nations of continental Europe, a creation of the medical profession. Doctors will not take organs from consenting dead people whose families object even though the law permits retrieval. A lesson in method follows: when describing the practice of organ retrieval, looking at the law alone is inadequate.
A vital second point is that in virtually no country is the consent of the deceased required before organs may be taken (Price 2000). When the deceased has not refused, the family’s agreement is enough to permit retrieval.
1.2 Proposals for reform
The persistent scarcity of organs has given rise to several proposals to reform the system for consent. The main ones are:
- Encourage or mandate clearer choices by the deceased.
- End the family’s power of veto.
- Change defaults so that organs are taken except when the deceased formally objected.
- Conscript organs.
- Pay for organs.
(1)–(4) are discussed below; for (5), see the entry on the sale of human organs. Before evaluating the proposals, we describe the claims of the main affected parties. In determining what the rules for retrieval ought to be, three main claims are in play. These are the claims of the deceased, the deceased’s family, and potential recipients of organs. Transplant professionals have claims too, which are probably best thought of as matters of professional conscience, but these are not discussed further here.
The dead. The “claims of the dead over their bodies” is almost invariably shorthand for “the claims of the living over their post-mortem bodies”, and that is how it will be understood here. While it is widely accepted that living people have strong claims over their own bodies, especially when it comes to vetoing invasions of their bodily integrity, it is much less widely accepted that the dead have such claims. Among the views that the dead have claims, we may distinguish between those which hold that events after death can harm the interests of the formerly-living and those which hold that it is only the fears and concerns of the living that have weight. Thus if it is asked why we should attach weight to a person’s refusal of organ retrieval, the first sort of view may say “because to take the organ of a person who refused damages his interest” and the second sort may say “because the anticipation of retrieval against his wishes will be bad for the living person”. The first sort of view is the subject of posthumous interests (see the entry on death).
Even if we accept that people may have posthumous interests, the content of those interests will often be unknown or indeterminate. Many people do not think about organ donation, which is quite reasonable given the low chance that they will die in such a way as to permit organ retrieval. In cases where they have not thought or not revealed their thoughts, it seems plausible to say that they have no interest for or against retrieval.
In some cases, the claims of the deceased will be in conflict with those of their families and/or the claims of potential recipients. The question arises of how to weigh the claims of the deceased. Some writers accept that the deceased can have posthumous interests, but believe them to be of little weight, particularly compared with the needs for organs of those with organ failure (Harris 2002, 2003). They may believe that people are not affected by their posthumous interests being set back or they may think the fear of retrieval is of little weight. In their view, any roughly consequentialist calculation would justify setting aside the objections of the deceased to organ retrieval. Other writers argue that if we accept posthumous interests and accept that people have strong claims over their bodies while alive, we have grounds to attribute rights to the living over their post-mortem bodies (T.M. Wilkinson 2011). Such a view needs to explain how posthumous rights are possible, since some writers in political and legal theory believe that rights could not protect posthumous interests for technical reasons to do with the nature of rights (Steiner 1994; Fabre 2008).
The family. If one accepts that the deceased have a claim, then families may acquire a claim by transfer. That is, the deceased may delegate decision-making power to their families, as is possible in some jurisdictions. Some authors have even suggested that the organs of the dead should be treated as something akin to inheritable property (Voo and Holm 2014). Acquiring a claim by transfer however is no more controversial than the deceased’s having a claim in the first place. What is the subject of dispute is whether the family should have a claim in their own right which could be set against the claims of the deceased or potential recipients.
Some argue for family decision-making on cultural grounds (Chan 2004, in the context of medical decision-making generally). For them, giving priority to the deceased is unacceptably individualist either in all cases or in cases where individualism is culturally abnormal (Boddington 1998). Among the difficulties for such views is to explain why, if individualism is mistaken, the decision about retrieval should be made by individual families rather than in the interests of the wider community, which may well require taking organs against the families’ wishes so as to meet the needs of potential recipients.
If families were overridden, it is reasonable to suppose that they would suffer extra distress: that is, even more distress than they would already be experiencing upon the often untimely and unanticipated death of the relative. Few writers deny that avoiding distress would be a good reason, although some believe (without much evidence) that a norm of taking organs and overriding families’ opposition would come to be accepted (Harris 2003). What is controversial is how strong a claim the family would acquire not to be distressed.
Finally, families are not monolithic, and sometimes they disagree among themselves about whether to endorse organ retrieval. How internal disagreement affects the families’ claims is something not widely discussed.
Potential recipients. As was said at the start of this entry, potential recipients stand to gain a great deal from receiving an organ in terms of both the quantity and quality of their lives. They are also badly off, in a medical sense, in that they suffer from organ failure. Utilitarian, prioritarian, and egalitarian views of justice and benevolence would, therefore, give considerable weight to the needs of potential recipients.
We now turn to consider the proposals for reform listed above.
1.2.1 Encourage or mandate clearer choices by the deceased
According to some, an important cause of family refusal of organ retrieval is uncertainty about the wishes of the deceased. Families that do not know what their relatives wanted often default to “no” (den Hartogh 2008a). To avoid the default, some writers would encourage people to decide about donation in a way others will know, for instance by paying them (De Wispelaere and Stirton 2010) and others suggest mandating choice by, for instance, withholding driving licenses from those who do not choose. The suggestion is not, or not in all cases, that people be steered into agreeing to donate or penalized if they refuse. It is that people be steered to make clear choices, yes or no.
Some ethical questions are raised by penalizing people for not choosing or for introducing monetary encouragement. It may be replied that no one is pressured to donate, as opposed to choose; that the penalties or encouragement are slight; and that transplants are of such value to the needy that any ethical objections are easily overridden. The real difficulty is that mandated choice seems unlikely to increase retrieval rates by much. In some places where it has been tried (such as the U.S. states of Virginia and Texas), people who are pressured to choose themselves default to “no” (den Hartogh 2008a). In New Zealand, where one must choose as a condition of getting a driving license, the choice is often ignored by intensive care doctors and families because it does not seem like a genuine decision.
1.2.2 End the family’s power of veto
Families usually have at least the de facto power to veto retrieval from the deceased, even those who adamantly wanted to donate their organs. Does this power not give excessive weight to the interests of families as against the interests of both the deceased and potential recipients?
As it happens, it appears that families rarely override the donors’ known wishes. Furthermore, it seems unlikely that many people would want to donate no matter how upset their families were, so allowing families to veto retrieval is unlikely to be against the all-things-considered wishes of many of the deceased.
In any case, transplant professionals have a practical reason not to override the family: they fear bad publicity. One version of their argument is this:
there are already urban myths about people having their deaths hastened so as to make their organs available; few people understand brain-death; donation would fall if families publicly claimed that their views were overridden and their relatives were not dead; thus ending the family veto would reduce the supply of organs, not increase it.
If the practical argument is correct, it is understandable why families have a medically-created power of veto. Moreover, it is hard to see that the veto is contrary to the claims of the deceased. While the deceased may have a claim to block retrieval, no one has a claim that other people use his or her organs. If the veto is in the interests of potential recipients, doctors may refuse the offer of organs by the deceased without infringing on the deceased’s claim (T.M. Wilkinson 2007a).
Some states in the U.S. have implemented “first person” consent laws that mandate overriding families in cases where the deceased has ticked the “donate” box or its equivalent on a form. It is unclear how far such laws are upheld. In principle, it might be possible to get some data on the effect of overriding families on the organ supply, thus testing the practical argument in the previous paragraphs. Ethically, first person consent laws arguably do not respect the wishes of the deceased, at least in cases where the deceased donors who ticked the box did not fully grasp that their families’ wishes would be overridden.
1.2.3 Change defaults so that organs are taken except when the deceased formally objected
This proposal favors what is variously called “opt-out” or “presumed consent”. A “hard” version would take organs even when the deceased’s family objected (with all the problems mentioned in the previous sub-section); a “soft” version would allow the family to veto retrieval. The leading argument for opt-out claims that many people want to donate but through inertia do not get round to opting in. In an opt-out system, inertia would prevent them opting out so their organs could be taken and, since most people do want to donate, the deceased would be more likely to get what they want and more organs would be available (Thaler and Sunstein 2008).
The proposal envisages taking organs without the explicit consent of the deceased. One may object that people’s rights over their bodies establish a duty of non-interference which can be lifted only with the consent of the rightholder (Kluge 2000). A different objection points out that taking organs without consent would sometimes be against the wishes of the deceased; and while not taking would be against the wishes of the deceased who had wanted to donate, taking in error is a worse mistake than not taking in error, because people have a right not to have their organs taken but no right to have their organs taken (Veatch and Ross 2015). As against these views, we must dispose of the bodies of the dead in some way, even if not consented to; and we give unconsented medical treatment to the unconscious even though some would have opposed treatment (Gill 2004; T.M. Wilkinson 2011).
Is it right to use the bodies of the deceased without either their consent or knowing that they had wanted the use? The question is an important and difficult one. It is very important to note, however, that this question is raised by virtually all existing organ procurement systems To restate: all systems allow organs to be taken without the deceased’s consent. It follows that the simple inertia argument for shifting defaults is flawed. There is no default of non-retrieval in the absence of the deceased’s consent. Other arguments for variations of opting out turn on the empirical question of effects on retrieval. Since many different factors affect retrieval rates, it is often hard to be confident about the difference that changes to consent would make.
1.2.4 Conscript Organs
The idea of conscription is to take organs in all suitable cases even when the deceased or family objected (except, perhaps, in cases of conscientious objection). Unlike the other reform proposals, conscription seems to have little political support. Nonetheless, some powerful philosophical arguments can be given for it. One argument, mentioned above, compares the strength of the interests of the deceased, families, and potential recipients, and claims that the need for transplants of those with organ failure is much greater than the needs of the deceased or their families (Kamm 1993; Harris 2002, 2003). Another argument draws an analogy with the relief of poverty. Many think the state may use its coercive powers to transfer material resources from those with a surplus to those with little. In other words, we think that people have welfare rights to resources. One way to fulfill those rights is to tax the estates of the deceased. By parity of reasoning, because organs are also resources and no longer of use to the dead, they too should be coercively transferred to fulfill the welfare rights of those with organ failure (Fabre 2006).
Conscription may be politically infeasible or be subject to practical objections. But what of principled ethical objections? One could point to the distress that families would suffer (Brazier 2002), but what of the distress of the families of people who die for want of an organ? One could point to the interests of the deceased, but the arguments above need not deny that the deceased have interests; they claim that those interests are outweighed. One could claim that the deceased have rights that protect their interests and deny that potential recipients have rights to organs. Even if the deceased have rights and potential recipients do not, it would have to be shown that the rights of the deceased are not outweighed by the needs of those with organ failure.
1.2.5 Further Proposals
As noted above, many factors affect the supply of organs and there are diverse clinical, logistical, and marketing attempts to increase supply. Some of these raise ethical questions. Consider preparing for organ retrieval patients who are not yet dead, for example by ventilating patients thought likely to die in the near future. If the preparatory measures are permitted, more donors would become available than if they are not. But these measures would not be done for the therapeutic benefit of the patient. They would be contrary to a duty to act only in the best interests of the patient, at least when “best interests” are understood as only medical interests. On the other hand, if “best interests” were understood more broadly, as explained in 2.1 below, then in some cases, such as where the patient had agreed to donate, the preparatory measures might be in the patient’s non-medical interests. In any case, the measures need not be against the patient’s medical interests.
As for social marketing (or “nudging”) to try to increase consent rates, these might target potential donors, as with campaigns to increase the number on a donor registry, or the families of those who have died, say by using specially trained people to ask their consent. In some cases, these ideas invite the question of whether they involve manipulation and whether any consent obtained is valid (Rebonato 2012; T.M. Wilkinson 2011). They also raise again the question of how much it would matter if consent were not valid if the supply of organs increased.
2. Organ Retrieval from Living Donors
The successful early transplants used organs taken from living donors. For a long time the hope was that, when technical problems were overcome, enough organs would be supplied by dead donors (Price 2009). That way, healthy living people need not undergo the risk and discomfort of non-therapeutic organ retrieval. That hope however was false and the persistent shortage of donors has led to the increasing use of living donors. Living donors are now the source of almost half the kidneys transplanted in the U.S. and nearly a third in the U.K.. It has been estimated that 27,000 living donor kidney transplants occur worldwide each year and constitute 39% of all kidney transplants (Horvat et al. 2009). Not only are kidneys transplanted from living donors; so too are parts of livers and lungs, although on a much smaller scale. The rules governing donation have generally become more permissive, allowing donations from close genetic relatives, then spouses, then partners and friends, and, in some jurisdictions, even strangers.
The primary ethical question raised by living donation is to do with the risk of having an organ taken. Having an organ taken imposes risks of death, disease, and discomfort from trauma, infection, the use of a general anaesthetic, and the loss of all or part of an organ (although the liver will usually regenerate, replacing the part removed). These risks are not negligible. However, the risk of death is not enormous. Focusing on the kidney, the most frequently donated organ and the safest to take from live donors, it has been estimated that the risk of death from kidney retrieval is 1/3000. There appears to be no difference between healthy screened living kidney donors and the general population in long-term survival and the risk of kidney failure. (Ibrahim et al. 2009). That said, the general population is less healthy on average than the healthy screened living donors, who do in fact undergo some extra risk of long-term renal failure as a result of one kidney being removed (Grams et al. 2016).
Under what conditions, if any, is it permissible to impose such a risk on someone who will receive no therapeutic benefit? For competent people, it is overwhelmingly accepted that their valid consent is a necessary condition of morally permissible retrieval. (A very few writers disagree, e.g., Rakowski 1991 and, less clearly, Fabre 2006). But even if consent is necessary, it may not be sufficient, and a further question is how much risk it is permissible to impose even on those who consent. Living donor transplantation also raises important questions about the validity of consent and about whether organs may ever be taken from healthy non-competent people, such as children.
2.1 “Do no harm”
Medical ethics traditionally instructs clinicians not to harm people. Taking organs from healthy people does seem to harm them, so living donor transplantation appears contrary to traditional medical ethics. One reply is to say that the “do no harm” rule is a relic of the medical profession’s paternalism; if people want to donate their organs and know what they are doing, why stop them (Veatch and Ross 2015)? This reply raises the difficult problem, discussed below, of how far consent justifies harm. Another reply is to say that taking organs from living donors may not be all-things-considered harmful to them (Spital 2004).
Suppose a person were prevented from donating an organ. On the one hand, the person would avoid the risks of physical harm. But, on the other, the person may suffer what are, in the medical literature, called “psychosocial harms”. These could include loneliness from losing a relative, having to act as caregiver to a person with organ failure, and survivor guilt. In philosophical terms, a person may also suffer vicarious harm. People whose welfare is intertwined with others suffer a loss when the other person does (Feinberg 1984; Raz 1986). Quite possibly, then, a person who donates may not suffer harm all-things-considered, that is, when all the different instances of harm are weighed up.
The “do no harm” argument against living donation is not widely accepted—that is why living donation proceeds apace. Nonetheless, even if the physical harm can be outweighed by the need to avoid other harms, or by consent, or both, one may think that as a matter of policy living donation should be discouraged. One fear is that increasing the use of living donors relieves the pressure to find ways to get more organs from other sources, notably the deceased.
2.2 Valid Consent
Assuming consent is ethically necessary before taking organs from living competent people, questions arise about what makes consent valid. The usual answer in medical ethics is that consent must be free (voluntary), sufficiently informed, and made by someone with the capacity (competence) to consent. Thus, in the context of living donation, people must know what living donation involves, including the risks to them and the chances of success for the recipient, they must be able to decide freely whether to donate, and they must be competent to do so.
Can people freely give consent when considering whether to donate to a close relative? It may be thought that consent in such a case is suspect because potential donors would be: (1) desperate to save their relatives (2) subject to a feeling of moral obligation or (3) subject to family pressure. The first two reasons are not good ones. People give valid consent in other desperate circumstances, for instance to a lifesaving operation, and acting out of a reasonable sense of moral obligation is a way of exercising one’s freedom rather than a constraint upon it (we consider below unusual senses of obligation in the context of religious stranger donation) (Radcliffe-Richards 2006; Wilkinson and Moore 1997).
Family pressure is different. Family pressure may take the form of credible threats of violence, in which case the potential donor is coerced and any consent invalid. Family pressure may be felt as a form of moral obligation on the part of the donor, in which case (see above) consent would not be made invalid for that reason. Somewhat harder to think through is family pressure that consists of the implicit threat of ostracism. On the one hand, that pressure may be very effective. On the other, it works by family members withdrawing their goodwill, something people are generally entitled to do. Some views of coercion and valid consent imply that consent to avoid ostracism would be valid (e.g., Nozick 1974); others do not (e.g., Cohen 1988). As it happens, transplanters will often furnish reluctant donors with “white lies” to enable them to avoid donating while retaining the appearance of honour. For instance, reluctant donors may be told to say they are clinically unsuitable on anatomical grounds. Whether “white lies” are mandatory or even permissible depends partly on resolving the question of when family pressure undercuts valid consent (den Hartogh 2008b).
Many living donor programs use extensive psychosocial screening as well as a lengthy consent process (Price 2000). Potential donors are screened for physical health, which is largely uncontroversial, but they are also screened for their motivations. The typical advice is to screen for excessive sense of duty, undue influence, unconscious internal neurotic influences, and abnormal emotional involvement. Screening of this nature is more controversial since it involves making difficult judgments about what counts as excessive in a sense of duty, undue in influence, and abnormal in emotional involvement, and it requires spotting neurotic influences. At least in the past, some critics have thought that transplant professionals have overused their power to refuse people as donors (MacFarquhar 2009).
To take one example, consider whether a member of a religious sect, such as the Jesus Christians, should be allowed to donate to a stranger. It may be thought that such a person could not be giving valid consent, perhaps because of what a sect has done (the “brainwashing” worry) or because of some psychological vulnerability. However, it is often difficult to decide whether a way of influencing someone is illegitimate or whether motivations and beliefs are signs of mental illness (see entry on mental illness).
2.3 The moral force of consent
Assuming a potential donor would give valid consent, how far would that justify retrieval of organs? The “do no harm” rule implies that people should not be harmed even with their consent although, as was said earlier, some living organ donation may not harm the donor all-things-considered. Suppose a man wanted to donate his second kidney to his second son, having already donated a kidney to another son, thus paying the price of a life on dialysis. Suppose a parent wanted to donate her heart to her child, thus causing her own death. Would transplant teams act wrongly if they took organs in such cases? And—what is a separate question—should they be allowed to?
It cannot be assumed that, in these desperate cases, the parents would be all-things-considered harmed by retrieval. Whether they are would depend on how the correct specification of harm handles vicarious harms and psychosocial harms. Perhaps a parent could be better off dead than to have to live without her child (which is not to say that her reason to donate is self-interest).
Suppose, though, that genuinely consensual organ retrieval would all-things-considered harm the donor. One way to try to decide when retrieval should nonetheless be permitted is to compare the values of autonomy with well-being. The question would then become an aspect of familiar debates about paternalism and the limits of consent. Living donation does have the unusual twist that, if one were to prevent donation, one would prevent an act of considerable value to a badly off person, the potential recipient. Moreover, to prevent living donation would be dissimilar to many acts of state paternalism, such as mandatory wearing of seat belts or the prohibition of certain drugs, in that donating an organ would not generally be the result of inattention, weak-will, addiction, or excessive short-sightedness. Because of its value to the recipient and because donors’ choices are not obviously flawed, living donation of the sorts that actually take place should be allowed and seems ethically permissible.
What about organ donation that goes beyond what is currently permitted, such as the donation of the second kidney or donation of an organ necessary for life? Liberal democracies do not generally allow consent to be a defense to bodily harm at or well below the level of death (Price 2000), but should they? The answer turns in part on how far third parties—transplant teams in this case—may inflict harms on those who genuinely give autonomous consent or, to put it another way, the extent to which autonomous people can waive their rights of bodily integrity. But policy considerations are also relevant. Can one be sure that consent is genuine? Would some people be forced into consenting in a way that a screening process would fail to detect? If so, how much weight should be attached to cases where organs are taken without genuine consent? These questions arise for living donation in general, but the errors are worse in cases where severe harm or death is the certain consequence of donation. (The questions also arise in the debates about whether voluntary slavery or euthanasia should be permitted (Feinberg 1986)).
2.4 Incompetent living donors
Although rules and practices governing living donation have generally become much more permissive, they have become stricter in the case of incompetent donors (Price 2000). In fact, live children have never been used as a source of organs in the U.K. (Brazier and Cave 2011) and there have been only 60 cases in the U.S. between 1987 and 2000 (out of approximately 40,000 live kidney donations) (Ross et al. 2008). As the discussion above of psychosocial screening implies, competence is not always easily determined, but let us assume in this section that we are considering clearly incompetent donors, namely relatively young children and people with severe mental disabilities or illnesses.
If valid consent were a necessary condition of ethically permissible organ retrieval from the living, then retrieval from incompetent donors would be wrong. However, it is not clear why consent should be a necessary condition in all cases rather than only in those cases where people are capable of giving it.
Several arguments have been given for permitting retrieval from incompetent people. Utilitarian arguments appear to permit retrieval because the donor loses less than the recipient gains. On the face of it, however, that argument would support organ conscription from living competent people too. Some people have argued in specific cases that the person would have wanted to donate, thus using the idea of substituted judgment familiar in other cases of deciding for incompetent patients. However, substituted judgment is misapplied in cases where the person is not, and never has been, competent (Buchanan and Brock 1990). More plausibly, it may be thought that, at least in some cases, incompetent donors are not harmed by donating an organ. If a child’s donation would save the life of a sibling with organ failure, the donor may gain in the psychosocial and vicarious senses described above in the discussion of the “do no harm” rule. Donors may be no worse off for donating, in which case organ retrieval would not infringe the “do no harm” rule (T.M. Wilkinson 2011).
Even if organ retrieval from an incompetent donor were ethically permissible in a given case, it may be that policy considerations, such as the risk of abuse, would justify an outright ban. Some writers, though, believe that legal safeguards would be enough to protect incompetent donors from abuse (Munson 2002).
3. The Allocation of Organs
The scarcity of organs creates an allocation problem. A great deal has been written in philosophy on the principles of the allocation of scarce resources, although not much on the allocation of organs specifically (see the entries on distributive justice; equality; justice and access to health care). Unsurprisingly, many of the principles cited in official transplantation allocation documents are familiar (see Other Internet Resources: TSANZ 2014; NHSBT 2013). These principles include allocating to those who would benefit the most (a proxy for utility), to those who are the sickest (a proxy for helping the worst off), to those whose medical condition will deteriorate the soonest (urgency), and to those who have been waiting the longest (often linked to equity). Official documents also stress principles of non-discrimination, which are taken to exclude allocating according to judgments of social worth, as well as race, sex, religion etc. In practice, the principles conflict; the person waiting the longest may not be the one who would gain the most from a transplant, for example. So official allocation protocols also have to say how the conflict between principles should be resolved. (For a philosophical discussion of the principles and their application to organ allocation see Kamm 1993.)
This article does not provide a full account of allocation principles for organs. Rather, it aims to do three specific things. First, it explains some of the features of allocation of organs that need to be taken into account when applying basic principles. This section draws to the attention of philosophers the real-world complexity of applying abstract principles of allocation. Second, it discusses the problems of responsibility for condition and social value. These problems are both ethically interesting and, while not unique to organ allocation, are more poignant than for other scarce resources because they often cannot be avoided just by making more money available. Third, it describes some transplantation-specific cases of the interaction between allocation rules and the number of organs retrieved for transplantation. These cases raise doubts about the coherence of some actually-existing allocation practices.
3.1 The complexity of organ allocation
The allocation of organs is certainly not just a medical problem to be solved with medical expertise (Veatch and Ross 2015). The principles that apply to allocation are quintessentially ethical principles. However, applying those principles correctly to produce final answers as to who receives organs does require medical knowledge and much other knowledge besides. To see the point, imagine that we have to design an organ allocation scheme.
Suppose we start with first-best principles, such as allocation according to need, or urgency, or benefit, or equity, or some mix of these principles based on some judgment of their relative weight. Clearly, applying these principles requires considering what organs do. Organs differ in many ways that matter to allocation, such as
alternative treatments to transplantation, the ability to stratify risk, the different factors that affect patient and/or graft survival, and differences in the interactions between donor graft and recipients on outcomes. (NHSBT 2013, p. 8)
To explain just one of these factors, nearly all patients in rich countries whose kidneys have failed have the alternative of dialysis, whereas most of those with acute liver failure have no alternative to transplantation but death. Liver allocation, to a much greater extent than kidney allocation, must thus make some judgment about the importance of saving lives immediately compared with, for instance, improving quality or extending lifespan.
Next, the application of the principles ought to range across all the stages of transplantation. Details vary from place to place and organ to organ but in general the pathway to transplantation can be thought of as having these steps: being referred for assessment; being assessed and then listed; and receiving an organ once listed. People may be halted at each step, perhaps for medical reasons, perhaps because they cannot pay (the so-called “green screen”) or because the public system will not pay. Principles need to range over all steps. For instance, scrupulous fairness to those on a waiting list may obscure injustice in access to the list.
Implementing first-best principles can have important secondary consequences. To take one example, the scheme the U.S. introduced in 1989 to allocate kidneys increased the weighting for immune system compatibility and the effect was to reduce the proportion of African-Americans transplanted (Elster 1992: ch. 5). Many thought the result inequitable because of the disparate impact even though the difference was not due to overt discrimination (see the entry on justice, inequality, and health).
In addition, a scheme must take account of procedural values such as transparency, non-arbitrariness, and public deliberation (Miller 1999, ch.5). For instance, we may think that time spent waiting on a list is only a rough proxy for fairness. Perhaps someone entered a list late because of the difficulties in finding the time and resources to complete the requirements for listing; in perfect fairness that person should not be disadvantaged as a result. And yet time waiting is a visible and checkable criterion, whereas taking account of diverse social and economic circumstances would be procedurally fraught when it comes to ordering a priority list.
Finally, allocation must take account of incentives in two distinct ways. It must consider how the scheme would be operated. The ideal application of first-best principles would require considerable flexibility and discretion. Fixed rules or algorithms inevitably fail to capture all the relevant information. And yet flexibility and discretion are open to gaming by doctors and patients, for instance in exaggerating the urgency of transplanting a patient. Thus incentive effects may make an ideal method sub-ideal in practice.
Allocation must also consider the incentive effects of an allocation scheme on the size of the donor pool.
This topic is discussed below.
3.2 Self-inflicted illness and social value
Two other specific allocation questions are:
- Should people who have caused themselves to be in need of a transplant by leading a “high risk” life be assigned lower priority?
- Should people who are more “socially valuable” be assigned higher priority?
Some people increase their chances of needing a transplant organ by leading what they know to be unhealthy lifestyles. Many of those who smoke, or drink alcohol excessively, or eat too much know that they are acting unhealthily (whether or not they know that smoking increases the risks of heart and lung failure, that drinking increases the risk of liver failure, and that obesity increases the risk of kidney and pancreas failure). It has been suggested that such people forfeit or weaken their claims to medical treatment (Brown 2013; Buyx 2008; Smart 1994; Walker 2010).
There is one “non-ethical” argument for this, called the Medical Argument. According to this:
… patients with self-inflicted illness … should have lower priority in access to health care because they are more likely to experience poor medical outcomes. (Sharkley and Gillam 2010: 661)
On the factual premise, it seems false that as a class those with “self-inflicted” illness would do so badly they should be deprioritized (Munson 2002), although transplant systems often do try to screen out those who would continue to act in ways that jeopardize their new organs. In any case, the Medical Argument is essentially just an application of more general cost-effectiveness criteria and not something that requires a special ethical justification. The arguments considered below, in contrast, are ones which claim that (for example) heavy drinkers and smokers should have lower priority access to organs even if they are no more likely than others to experience poor transplant outcomes. There are three main ethical arguments for this claim, two of which are clearly quite weak; a third, the Restoration Argument, is worth taking more seriously.
The first argument concerns incentives. It says that if (for example) we refuse to provide heavy drinkers with liver transplants then this will discourage irresponsible drinking. Similar things are said about overeating and obesity.
The argument however is problematic. To continue with alcohol, would organ allocation policy really make much difference to people’s drinking-behavior? Some reasons for thinking not include:
- The very long-term nature of the calculation that drinkers would be required to make. They would need to gamble on organ allocation policies staying as they are for perhaps many decades and would need to trade off highly speculative longer-term gains (maybe needing and then getting an organ many years down the line) against short-term pleasure and reward (having another drink now).
- Serious liver disease ought to be incentive enough. If the prospect of serious organ failure is not acting as an incentive then what are the chances of allocation policy doing so?
- Many heavy drinkers are dependent on alcohol and so incentives may not engage them effectively. Similar things might be said about smoking, illegal drug use, and even diet (Walker 2010).
Another challenge for the incentives approach is that if the rationale for deprioritising heavy drinkers, say, is simply incentivisation then there is no reason to restrict these measures to cases of organ failure. Why not instead remove their driving licenses, or their access to non-urgent healthcare, or subject them to punitive rates of tax? Such measures could all be incentives to stop drinking and would surely be more effective—not least because their effects would be felt straightaway, rather than many years down the line.
The next argument suggests that heavy drinkers and smokers should be deprioritised on transplant waiting lists as a punishment for wrongdoing. There are several reasons to reject such a position:
- Unhealthy behavior such as excessive drinking, overeating, and smoking may well not be morally wrong nor merit punishment.
- If punishing wrongdoing is the purpose of the allocation exercise then there are probably more deserving candidates for punishment than those who overindulge (even if there is something morally wrong with such overindulgence).
- Using healthcare resource allocation as a mode of punishment is impracticable and unfair, and may have adverse consequences (such as negative effects on public attitudes to organ donation and to doctors). Selecting only certain risky behavior as immoral seems arbitrary. Waiving that problem, how are judgments about causal and moral responsibility to be made in a timely and cost-effective way, and how are doctors going to make them? Punishment should only be meted out by state bodies (i) for prohibited acts (so not, in most countries, drinking, overeating, and smoking) and (ii) following “due process” in a court (Harris 1985).
A version of objection (c) applies to an opposite policy proposal: that higher priority should be given to patients with high social value. This “social value” could either be instrumental (doctors, nurses, parents of young children perhaps) or moral (prioritising the virtuous). The fundamental objection to rewarding social value is that it infringes a principle of equal treatment but, putting that aside, it has the practical and fairness problems of the punishment proposal. How is social value to be determined and then how is it to be applied in a timely and cost-effective manner? And, given the potentially dire consequences of being assigned low social value (which could in practice be a “death sentence”), procedurally it seems reasonable to expect something akin to a court hearing. A version of allocating according to perceived social value (among other criteria) was tried in Seattle in the 1960s in allocating very scarce dialysis. The result seems to have removed any enthusiasm among transplant systems for trying it again. (Alexander 1962).
Perhaps one exception to this is giving higher priority to frontline healthcare workers in situations where such workers are themselves a scarce resource, and where therefore there would be fewer transplants overall if sick healthcare workers were not prioritised. The justification here is that whereas many other “social value” based allocation decisions are zero-sum games, prioritising healthcare workers could instead increase the total number of available transplants. This argument has some merit but is not fundamentally so much about social value per se as about the pragmatics of maximising lives saved. Thus, social value notwithstanding, if the healthcare labor market was oversupplied and doctors and nurses could easily be replaced then this pragmatic argument would not apply. Conversely, this pragmatic argument could apply to any shortage profession: e.g. in a situation where, because of a shortage of Human Resources consultants in the health sector, fewer operations are taking place than would otherwise be the case.
The most promising argument in favor of deprioritising those with “unhealthy” lifestyles is the Restoration Argument, which goes as follows (Harris 1985; Smart 1994; S. Wilkinson 1999).
- Some people (risk-takers) knowingly and voluntarily have unhealthy and/or dangerous lifestyles.
- Risk-takers are more likely to need transplant organs than the general population (non-risk-takers).
- Transplant organs are in short supply.
- Because of (2) and (3), if we allocate on the basis of clinical need or clinical outcomes alone, non-risk-takers will be harmed by the risk-takers’ lifestyle choices; the non-risk-takers’ chances of getting a transplant organ will be lower because of the risk-takers’ increased demands on the system.
- To allow the non-risk-takers to be harmed by the risk-takers would be unfair. Why should non-risk-takers have to pay the price for risk-takers’ lifestyle choices?
- In order to avoid this unfairness, risk-takers’ entitlements should be reduced such that there is no harm to the non-risk-takers.
One of the most attractive features of this argument is that it grounds the deprioritisation of those with unhealthy lifestyles not in value judgments about their lifestyles, but rather in a more neutral set of concerns about preventing harm to innocent third parties. Thus this argument could apply regardless of whether the risk-taking behavior in question is virtuous or vicious.
Even this argument faces difficulties though. One practical problem is that risk-taking may not generate additional healthcare costs or demand for organs. Indeed, some kinds of risk-taking behavior (motor sports perhaps) could even increase the supply of high-quality cadaveric organs available for transplant.
S. Wilkinson (1999) takes this fact as a point of departure for a deeper critique of the Restoration Argument. He claims that, if it turned out (as is likely) that smokers cost the U.K.’s National Health Service less than non-smokers (because on average they die younger) then proponents of the Restoration Argument would be committed to the unpalatable conclusion that smokers should be given not lower but higher priority than other patients. Otherwise smokers would be harmed by the non-smokers’ deliberate attempts to extend their own lives by avoiding smoking. His argument is about financial resources but very much the same would apply to organs in relevantly similar situations of scarcity.
Wilkinson concludes that this objection seriously weakens the Restoration Argument. Either it is simply a reductio ad absurdum of the Restoration Argument, in which case the argument must be rejected wholesale. Or at least its defenders will need to appeal to something like moral or social value in order to avoid the argument’s unacceptable consequences—thus making it vulnerable to some of the problems with appealing to social value noted above (Walker 2010; S. Wilkinson 1999).
3.3 The interaction of allocation and donation
In the economy, the amount produced depends in part on how production will be allocated, at least insofar as people respond to incentives (see the entry on distributive justice). For instance, a guaranteed equal share gives no self-interested incentive to work hard or in an efficient job. In organ transplantation, the number of organs available also depends on how they would be allocated. In the economy, ideal allocation principles may have to yield to the reality of incentives, which is why it is often thought that strict equality is precluded by concern for efficiency. Similarly, transplantation seems to face a choice; it can keep its ideal principles and have fewer organs or compromise them and have more. Some examples discussed here are live donation, kidney exchanges, directed deceased donation, priority to donors, and priority to children. These examples are diverse so one cannot straightforwardly tell whether practice in one is consistent with practice in another. Nonetheless, they have in common the question: what if the usual principles of allocation led to fewer organs being donated than would deviating from those principles? That they have this question in common has not been widely appreciated, which may explain why the question has been answered in different ways in the examples described below.
Live donation. The vast majority of live organ donations have a designated recipient, usually a relative or friend. Usually the designated recipient is not the person who would have got the organ if it were allocated via the method for deceased donor organs. Transplantation systems could refuse such offers for the sake of their normal allocation principles—but they do not. One obvious sufficient reason is that, if the organs were not allocated to the person the donor designates, the donor would not donate and an organ would be forgone.
Kidney exchange. Sometimes potential live kidney donors cannot donate to the recipients they wish because their kidneys are incompatible with the recipient’s body. Many systems now arrange complicated swaps whereby pairs or more than pairs of live donors give to each other’s recipients (Fortin 2013). Sometimes people donate into the general pool in exchange for their preferred recipient getting the next available deceased donor kidney. Unless the preferred recipients would happen to get the deceased donor organ anyway under normal allocation rules, they jump the queue. As with more common methods of live donation, the normal allocation principles are suspended so as not to forgo extra organs.
Directed deceased donation. The suspension of normal allocation principles when live donation is involved often passes by without notice. Much more controversial is directed deceased donation. The direction can take the form of naming a recipient, as when a dying person stipulates that she wants her organ to go to her daughter. Or it can take the form of specifying a group either to receive or be denied the organ. The most controversial direction has been ethnic, when donors or their families have tried to prevent organs going to members of certain ethnic groups (T.M. Wilkinson 2007b). On the face of it, refusing directed donations forgoes organs for the sake of a principle of allocation, which is the opposite of practice with live donation. Matters are more complicated because the overall incentive effects of accepting directed donations are unclear. However, jurisdictions such as the U.K. have banned accepting directed donation for reasons besides the overall effect on the organ supply (U.K. Department of Health 2000 in Other Internet Resources). They have cited principles such as allocation according to need as giving sufficient reason, independent of effect on numbers. A consistency argument can be put to them: why do they accept deviations from allocation according to need in the case of live donation but reject them for deceased donation?
Priority to donors. A minority of jurisdictions give some priority in receiving organs to those who have declared their willingness to donate. One reason is the supposed incentive effect of giving priority to donors of encouraging more donations. Priority schemes have been criticized on practical grounds but some criticism invokes principles, such as allocation according to need (Quigley et al. 2012). As before, the principles are supposed by those who cite them to be sufficient to defeat priority schemes even if they would produce more organs. By contrast, the principles are not thought to outweigh getting more organs with live donation and kidney exchange.
Priority to children. Nearly all jurisdictions give priority to children when allocating kidneys from deceased donors. One upshot seems to be a reduction in the overall supply of organs, at least in the United States (Axelrod et al. 2010). People who would have been live donors to children do not donate when the children get rapid access to deceased donor kidneys. Perhaps potential living donors would rather have the child get a deceased donor organ than run the risk for themselves; perhaps they would like to hold their kidneys in reserve in case the children need retransplantation or other children need them. One might think that if priority to children reduces the number of living donors to them it should increase the number of living donors to adults. Nonetheless, the overall effect is negative. As before, those who endorse the principle of priority to children have some choosing to do; how many organs are they willing to forgo for the sake of the principle, and is the answer consistent with their willingness to accept designated live organ donations (Wilkinson and Dittmer 2016)? A more unpalatable choice would arise if discriminating against children produced more organs via live donation.
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We would like to thank Dr. Nicola Williams for providing research support.