On April 2011, Jennifer Wederell from Essex received a lung transplant at Harefield Hospital, London, 18 months after being put on the waiting list. The 26 year old woman had had cystic fibrosis from the age of two and was in desperate need of a transplant to get off the 24-hours-a-day supply of oxygen that was keeping her alive. The lungs came from a middle-aged donor and were deemed clinically safe. On February 2012 a malignant tumour was found in the newly transplanted lungs, which she was told came from a donor who smoked one pack of cigarettes a day. Jennifer Wederell had married her fiancé shortly before the diagnosis. When it was diagnosed, the cancer had already spread through her body. She died in August 2012 at the age of 27. According to a parliamentary answer by the then health minister Earl Howe, around 39% of donated lungs come from smoker donors. The increasing reliance on organs coming from high-risk patients is a direct consequence of the growing gap between demand and supply of suitable organs for transplantation.
At the time of writing 123,907 in the US are on a waiting list to receive a transplant, and on average 21 people die each day while waiting. In the UK, 7,026 patients were waiting for a transplant in March 2014, and on average 3 die every day. Most countries in the world face a scarcity of organs for transplant. Given the magnitude of the situation, thoughts and efforts have been spent on trying to come up with improvements to the current systems and solutions to the shortage.
Iran has curbed the scarcity of kidneys by legalising their buying and selling. Some regulations apply. Kidneys cannot be sold outside of the country, and to discourage transplant tourism, the nationalities of donors and receiver must be the same. Each individual can decide to sell their kidneys directly to a matched receiver, while the state contributes to 10% of the cost as well as one year of medical care. The matching between donors and recipients is done by a non-profit organisation, to which patients can apply if they fail to find a suitable cadaveric donor. A longtime proposer of this kind of system was the Nobel laureate economist Gary Becker, which in a famous article in the Wall Street Journal held that “sufficient payment to kidney donors would increase the supply of kidneys by a large percentage, without greatly increasing the total cost of a kidney transplant”. Singapore has recently introduced legislation to allow the recipient to compensate the donor for various costs incurred in the act of voluntary donation, a move that some say effectively legalises the sale of non-vital organs for profit. A similar law allowing for compensations and reimbursement of specific expenses is in place in Israel, although organ trafficking is explicitly forbidden. Australia has refused to legalise the market for organs but has introduced a financial incentive for voluntary donors in the form of a six-week paid sick leave.
Some make the case that organs can be taken from live donors regardless of their consent if the state has deprived them of their right to live. The activist and physician Jack Kevorkian advocated the harvesting of organs from executed prisoners and for the removal of non-vital organs prior to execution. China’s authoritarian rulers share a similar orientation: a 1984 regulation authorised the removal of organs from executed prisoners. Technically the prior consent of the criminal or of his family is needed to proceed with the operation, but granting consent from prisoners and family members is obviously hard to establish and several accusations have been made by human rights groups and foreign political bodies. Hasty cremations of executed convicts keep fuelling suspicions of organ being snatched even when consent is denied, and there is evidence of organs being harvested from live members of the religious group Falun Gong. Prisoner-harvesting supplies a large majority of the 13,000 organs transplanted in China every year.
The practice is not new. In the late 1800’s, surgeons like Serge Voronoff would implant tissue from the testicles of executed criminals into the body of wealthier buyers as an anti-aging therapy. Hundreds of such operations were performed across Europe before the procedure was dismissed as ineffective and potentially dangerous, and the gains in the patients well-being ascribed solely to placebo effects. It is only when demand for the procedure was too high and supply of prisoners couldn’t keep up that Voronoff started experimenting with chimpanzee testicles.
The case for a presumed consent system
A less ethically convoluted structure for an organ donation system is one that excludes any monetary incentive from the decision to donate organs, while striving to respect fully the decision of the individual. Systems of this kind, implemented in most countries, can be divided in two categories: those with Presumed Consent legislation (or Opt-Out systems) and those without (Opt-In systems).
Countries with Presumed Consent legislation assume that most people don’t have an objection to their organs being donated after their death. Unless a person has opted out of the system, his organs will be harvested and donated after his or her death. Legislations differ across countries. Some countries, such as Sweden and Spain, have a so-called Soft Opt-Out system, which mandates the physician to seek the authorisation or the opinion of the deceased’s family before proceeding with the donation. Countries like Austria and Singapore, in contrast, implement a so-called hard opt-out system, where physicians don’t need to consult the partners or relatives of the deceased before harvesting the organs. Hard opt-out systems are the most likely to generate distrust of the government and of the medical profession: a hard opt-out system was put in place in Brazil in 1997, but had to be repealed in 1998 due to fears of the public and allegations of body snatching.
Israel introduced a presumed consent system in 2008, with the peculiarity that priority is given on the donation waiting list to those who have not opted-out and to those whose relatives haven’t either. This feature is an attempt to incentivise organ donation rates, which are particularly low in Israel: only 10% of the population has a donor card, much less than the 30-40% average found in European countries. Organ trafficking is illegal in Israel, but only since 2008.
The decision to opt-out of the system is usually made by the individual: in Singapore, however, the whole Muslim community opted-out of the organ donation system as a group until a reform in 2008, so that consent could not be presumed for members before that date. In Singapore, too, priority in the waiting list is given to individuals who haven’t opted out of the system.
A similar classification according to the degree of family involvement can be made for Opt-In systems. In the UK, for example, where the organ donation system is regulated by the Human Tissue Act of 2004 and the Human Tissue (Scotland) Act of 2006, a Soft Opt-In system is in place: relatives of the deceased have to be informed of his or her decision to donate organs, and doctors can decide not to proceed if the family opposes doing so. Wales is an exception in the UK. A recently approved law will implement a soft opt-out system starting from December the 1st, 2015.
Countries with Presumed Consent Legislation tend to have higher rates of organ donation than countries with an opt-in system. This great discrepancy in rates of donation is seen by some, such as the Psychologist Daniel Goldstein and by the Business professor Eric J. Johnson, as a product of Status Quo Bias, an irrational preference for the default option in situations when a choice it to be made. According to their research, published in 2003 in Science, the default option has a disproportionate influence over the actual outcome of the decision process. Default options can be interpreted by the public as implicitly endorsed or recommended by the government; they do not require any effort or energy to be chosen; and finally they might be preferred because, contrary to non-default choices, do not require a careful analysis of the trade-off between different possible actions. For these reasons, Goldstein and Johnson argue that introducing an opt-out system could drastically raise donor rates, and that such a change would help more than financial incentives or increased information regarding the system.
Both opt-in and opt-out systems rely on an assumption over the will of people regarding the donation of their organs and tissues. Requesting explicit consent is a safe option and minimises the chance of taking organs off the body of someone who opposes it, but the assumption the system rests upon is in contrast with empirical evidence. In the UK, for example, between 65% and 90% (estimates differ in different studies) are in favour of donating their organs, but only 25% have registered as donors. A similar pattern is observed in many other countries. In the US, for example, while 85% approve organ donation only 28% of citizens have granted consent to the donation of their organs. In the UK, the latest survey conducted for the NHS showed that in 2003 90% of people supported organ donations, while only 30% had registered to be a donor.
The vast majority of people are in favour of organ donation, so it seems just sensible that we reconsider the morality a system based on the notion that the opposite is true.
It is not clear however that the cost and difficulties of the implementation of an opt-out system would be justified by the increase in donor rates. Such an increase is hard to assess, and studies disagree not only on its size, but on its very existence. An authoritative study on the subject has been published recently on the online medical journal BMC Medicine by researchers from the Universities of Nottingham, Northumbria and Stirling. The longitudinal study uses 13 years of data from 48 countries, 23 of them with an opt-in system and 25 with presumed consent legislation.
By comparing different countries with respect to the number donors of kidney and liver, the researchers found that although countries with presumed consent have both a higher number of cadaveric donors and a higher overall rate of donors, in countries with an opt-in system people donate more non-vital organs when they’re still alive. This, as the researchers have noted, suggests that some subtleties in the dynamic between the legislative framework and the rate of donation might have been so far escaped the attention of the experts. Most importantly, the many differences between the countries examined make it hard to establish whether the difference in donation rates is due to the different systems implemented.
For these reasons, not all agree on the efficacy of an opt-out system. In a study published in the journal Transplantation, a group lead by Dr. Dorry L. Segev interviewed transplant experts in 13 European nations with an opt-out system. They found that most of the doctors interviewed would still discuss with the family of the deceased about the possibility of organ donation and would not proceed with the harvesting if objections were raised by the family, even when this would not required by law (only 6 of the 13 countries examined actually require physicians to consult with the family of the deceased before removing the organs). According to Dr. Segev, presumed consent is not only inefficient and unlikely to raise the rates of organ donation, but it also raises serious ethical problems. He noted in an interview reported on the MNT website that “”Opt-out is not the magic bullet; it will not be the magic answer we have been looking for. With opt-out the perception becomes, ‘We will take your organs unless you take the time to fill out a form.’ That’s a dangerous perception to have. We only want to use donated organs from people who intended to donate”. Segev holds that it is an efficient coordination network, clarity of information and dedicated physicians that take the time to discuss with the families and explain them about donation that make a difference in the countries, like Spain, that have a very high number of donors. It is the clarity and the commitment of physicians, he holds, that raises the number of donors, not the introduction of an inefficient, morally debatable presumed consent system. This view is shared by Dr. Matesanz, president of the Spanish National Transplant Organisation, which is adamant in holding that the introduction of presumed consent was not the primary reason for the increase in the number of donors in Spain. As evidence, he points out that an opt-out system was in place in Spain since 1979, but that donor rates increased only after 1989, when a new infrastructure was put in place through a national transplant organisation. He also points out that Sweden still has one of the lowest rates of donation in Europe despite having an opt-out system since 1996, and that Britons living in Spain have a much lower refusal rate when they are approached to discuss donation of the organs of a deceased family member than when they face the same situation in the UK.
A taskforce has indeed been established in the UK to evaluate the possibility of introducing an opt-out system. In a report published in 2008, it suggested that such a system should not be established, as it would be unlikely to raise the number of organ donors, while it could risk generating a public mistrust of doctors which would lower the rate of donation in the long run. According to the taskforce’s report, it would be “complex in practical terms and also costly to put in place an opt out system that could command the trust of professionals and members of the public”, while introducing faulty one could potentially “damage the vital relationship of trust between clinicians caring for people at the end of life, their patients and their families”, thus generating a mistrust between families and physicians that would decrease the number of voluntary donors, and take years to heal. However, the task force also established that a majority of the public, around 60%, would support a change towards an opt-out system.
It is clear from this quick summary of the debate that to reduce the problem of organ donation to one of allocation would sidestep the obvious ethical implication of the choice between the systems.
Ultimately, it is impossible for governments and policymakers to avoid facing some very complicated questions. Should people or groups who opt out still be allowed to be recipients of other people’s organs in case they need them? Does a soft opt-out or opt-in system, where the family is consulted after death, infringe on the freedom of each individual to decide of their own body, or does it constitute a safeguard and an important source of information on a deceased’s preferences when these had not been made clear? What should be done with respect to the organs of individuals which may lack the mental capacity to express judgment? Is it better to risk taking the organs out of the body of someone that didn’t want to, potentially alleviating a tragic scarcity, or not to take them out of someone that wouldn’t have had any objection to it, but that failed to record an opinion about it? And finally, would introducing presumed consent help at all, or should reformers focus their efforts on building a better infrastructure and improve communication with partners and relatives?
Despite the recent hype that sees the problem as the tragic product of a psychological bias, the reasons for the scarcity of organs are complex and cannot be solved simply by introducing a presumed consent system. The experience of Iran shows that the scarcity of non-vital organs can be virtually eliminated by legalising the sale of one’s own organs, but also that such a system is soaked in ethical and practical issues. Mechanical devices reproducing the functions of human organs, or synthetic organ replacements, will potentially be available at some point in the future; a balance between ethical imperatives and organisational compromises must be found and maintained in the meanwhile.