India has one of the lowest organ donation rates in the world. As per the International Registry in Organ Donation and Transplantation (IRODaT), the number of persons donating organs per million population stood at 0.52 in 2018-19. Compare that to Spain which stood at 49.61 per million. Awareness of organ donation programmes is a necessary but insufficient factor leading to higher donation rates.
Unfortunately, a reading of the National Organ Transplant Programme Guidelines would tell you that the main thrust of the government policy is on awareness creation, i.e. Information, Education, and Communication (IEC) initiatives through television and radio broadcasts, distribution of pamphlets, and conferences, and capacity building for organ storage. Yet awareness does not translate into willingness to donate.
An attitudinal survey conducted in Mangalore (Mithra et al.) is illustrative of the problem of low organ donation rates in India. It showed that 94.7% participants were aware of both living and cadaveric organ donations and only 33.7% of the respondents reported a willingness to donate all organs after death. These results are similar to studies conducted in other places. Awareness does not translate into willingness.
A significant cause behind the low willingness to donate organs is the ritual and religious beliefs. In the aforementioned study, out of the total respondents who did not want to donate, 30.9% cited religious reasons, and “39.8% cited the reason that they did not want their body to be cut open/organs taken out from their body after their demise”.
This could be rooted in religion or sheer personal preference to keep one’s body in pristine form. Hindus have last rites in which high importance is accorded to the body being in its pristine form. Similarly, among Muslims and Christians, the burial of the body is attached to a certain number of rites and traditions, and there may be a psychological hitch in not having the body in its pristine form to perform those rituals.
None of the religions, however, prohibits organ donation. In different ways, all three religions look at the spirit or soul as separate from the body. In fact, various studies across the world show that if a person believes that their religion or religious leaders are in favour of organ donation, they are more likely to have a higher willingness to donate and vice-versa. It is more about the interpretation of faith than actual religious doctrines and therefore religious leaders could play a major role in encouraging organ donations.
Regarding concerns about the body being cut open for the organs to be taken out, technological innovations that minimize physical mutilation (or proper restoration of the body in its outer form) in cadaveric organ extraction procedures could go a long way in increasing the acceptability of donation. Funding such programs and creating awareness around them once successful could be a potential thrust of a future policy. Unfortunately, we don’t have that as of now.
Presumed consent may lead to public discomfort
The lack of willingness to donate is not just about religious or cultural aspects, it is also about policy and human behaviour. Generally, countries with a presumed consent or opt-out donation regime such as Spain, Australia and Belgium tend to have higher donation rates than countries with explicit consent where a person has to opt-in and sign up as a donor which is the case in India.
In presumed consent systems every citizen is presumed to be a donor upon their death unless they or their family members indicate that to opt-out from being counted as a donor. Under this system, presumed consent will be considered a default option, i.e. “pre-set courses of action that take effect if nothing is specified by the decision maker” (Thaler & Sunstein, 2008). Since people have a tendency to stick to default options, many do not take the effort to deviate from it and therefore default options matter in changing policy outcomes.
The unique challenge of India as a developing country is that if it were to move to the presumed consent regime in organ transplantation, there will be concerns regarding the violation of fundamental rights. Governments can be seen as arm-twisting people into becoming donors, thereby violating their right to freedom enshrined in the Constitution of India.
Presumed consent may also be challenged as a violation of the right to die with dignity has been interpreted by the Supreme Court to fall under the fundamental right to life (Common Cause vs Union of India, Supreme Court of India, 2005).
Further, in almost all countries with a presumed consent regime, in addition to the donor opting out of the system while living, the family of the deceased has the option to deny the mutilation of the body even if the person in question was presumed, legally, to be a donor. This would indeed create further practical and legal complications. Consider for example a widespread trend where most families prefer to opt out their deceased relative from the donation system – the whole enterprise may fail.
Or consider a scenario where medical practitioners, to meet the demand for organs, hurry to extract them from a recently deceased person before their family can raise an objection. This would create clashes, even violent ones, between the patient’s family and the doctors. In Belgium, for example the “permission of the family is not required for organ retrieval but organs may not be removed if the family takes the initiative to oppose donation.”
“There is, however, no legal obligation to inform the family of the intended removal of organs. The law is also applicable to non-Belgian citizens resident in the country for more than six months.” If a similar setting was to exist in India, one can assume that a few doctors would prefer not waiting for the family to make a decision and may proceed to extract the organs without informing the family of the deceased person, thereby triggering more conflicts and litigations.
Consider scenarios where doctors, under the pressure of fulfilling the demand, may not give it their best in trying to save their patients’ lives or may do so selectively in a manner where they de-prioritize saving the lives of patients based on their own values. A patient whose life may seem more precious according to the doctor’s own value systems may get the required attention and effort from the doctors and others who do not fit the criteria may simply become ready resources for organs which so many of the others in the society may need.
To clarify, let me draw a parallel. In a rather provocatively titled paper The Prostitute, the Playboy, and the Poet: Rationing Schemes for Organ Transplantation (1985), Prof. George J. Annas of Boston University cites a scandalous case that caught national attention in the US in the 1970s in Seattle, Washington, where an anonymous screening committee was set up to pick who among competing candidates would receive the life-saving technology (organ transplant).
“One lay member of the screening committee is quoted as saying: The choices were hard … I remember voting against a young woman who was a known prostitute. I found I couldn’t vote for her, rather than another candidate, a young wife and mother. I also voted against a young man who, until he learned he had renal failure, had been a ne’er do-well, a real playboy.
He promised he would reform his character, go back to school, and so on, if only he were selected for treatment. But I felt I’d lived long enough to know that a person like that won’t really do what he was promising at the time.””
The public at large as well as experts across the country criticised such arbitrary criteria and the latter expressed that the committee was measuring persons in accordance with its own middle-class values. As a result, The US Congress enacted legislation that provided federal funds for virtually all kidney dialysis and kidney transplantation procedures in the United States, but it did not cover other types of transplants that later became increasingly common such as those related to the transplants of kidney and heart.
In a country like India, presumed consent may actually create more room for ethical dilemma and biased judgments on the part of the doctors in saving the lives of patients needing critical care, even though they are ethically bound to save all lives to the best of their ability.
Mandated choice may lead to exclusions, crime
Similar problems exist in the “mandated choice” regime in which it is compulsory for a person to declare whether they wish to be a donor or not. Usually, this declaration is made compulsory by clubbing it with the issuance of a government ID such as a voter ID card or a passport. New Zealand is the only country to have a (since the 1980s) a mandated choice system in which registration is only possible via the driver’s licence (see Rosenblum et al., 2012).
All non-drivers are excluded in this regime. Therefore, the choice of the ID platform used to gain consent also becomes important. Not all citizens are registered as voters in India. Yet the already increasing numbers of voter registrations, and even increasing Aadhar card holders may make voter ID and/or Aadhar registrations desirable systems to club the organ donation mandatory choice with. Still, given the concerns of storage and protection of data, there will be concerns of data leakage.
The arguments relating to increased crime due to presumed consent or mandated choice, however, should still be taken with a grain of salt because the current opt-in system is also susceptible to criminal activities. What if someone, under the current system, forces or pays a person to register as a donor, their vitals may match a potential receiver’s needs, and that follows the murder of such a person? Such scenarios cannot be ruled out. Such scenarios can also arise in the presumed consent regime as well.
An ethical market for organ donation ?
Concerns for crime and duress would also be an impediment to creating an ethical market for organ donations. Individuals resorting to selling organs under financial burden or other socio-political duress may preclude a successful organ donation market from functioning. John Harris and Charles Erin argue for the creation of a monopsony, a situation where only one buyer exists for the products of several sellers.
No direct person-to-person selling would be allowed. In a monopsony, “the one legitimate purchaser in the marketplace would be required to take on responsibility for ensuring equitable distribution of all organs and tissues purchased. This would prevent the rich from using their purchasing power to exploit the market at the expense of the poor.”
In theory, this system may work if we rule out the possibility of corruption. However, in a developing country like India where institutional oversight and accountability are still not as robust as in many developed countries, one could expect certain people to exert extra-constitutional influence in collusion with certain corrupt officials to gain preferential access to organs. A monopsony, may not be the answer after all.
Cultural, religious and celebrity influence
Given India’s unique context, its policy options to increase the organ donation rate are limited at the moment. A combination of mandated choice with strong data protection mechanisms and increased policing as well as judicial capacity are the macro-structural changes that are only likely to evolve in the long run. Until then, a greater focus to increase donor rates through religious leaders, celebrities, and political leaders across party lines, may prove to be a great pull factor in increasing organ donation rates.
For example, the greater acceptability and willingness for eye donation after death may be correlated to celebrities taking the lead in signing up as donors and communicating about it. Finally, such communication should also focus on dispelling misinformation and addressing concerns as recent studies have found that in the case of eye donation, concerns regarding the proper utilisation of the donated tissue (often rooted in misinformation) results in unwillingness on the part of the population to become donors.