Rewarding families of deceased organ donors is an ethical minefield, especially in India

Last month, the Central government announced plans to set up a fund for families of people who have donated organs after brain stem death. The fund will support the education of children of deceased donors as well as medical expenses of other family members.

There is no doubt that many families would benefit from the kind of rewards being proposed. On the other hand, providing support that has financial value to the family of the deceased on the condition that donation is approved may be construed as payment for organs and open a Pandora’s Box. In organ donation, the lines between inducement, incentivisation and support to a donor or her family is very thin. India has an unfortunate history of rich people, including foreigners, inducing poor Indians to sell their organs. In spite of the punishments, such rackets are still being exposed.

The Transplantation of Human Organs Act passed by the Indian Parliament in 1994 created an enabling environment for deceased or cadaver donor transplants in two ways. First, it gave legal sanction to the concept of brain stem death. This means that death may be declared when someone’s brain function is fundamentally and irreversibly damaged, knowing that their heart will inevitably stop beating. As a result, after death is determined, and when clinically appropriate tests have been done and consent has been obtained from the family of the deceased, the Act allows surgical removal of organs from these individuals for transplantation. Such deceased donation has enabled transplantation of organs like the heart, which cannot be procured from live donors. India was notably one of the first amongst developing countries to legally recognise “brain death”, joining a large number of developed nations.

The second important feature of the Act was the inclusion of statutes that criminalised trade in organs and established penalties for those involved in any form of trade in organs. This was a response to unfortunate and sordid incidents in which rich patients bought kidneys from poor donors. Such activity, which involved collusion of some health providers, resulted in the Indian transplant system gaining international disrepute for exploitation of the poor.

Encouraging cadaver donations

It will soon be 25 years since this Act has been operational in India. During this period, it has undergone amendments largely directed at simplifying the complex procedural requirement of brain death declaration as well as making it possible for more near relatives such as spouses to become live donors.

Deceased donations were slow to pick up in the first two decades. However, over the last few years, campaigns by civil society groups and supportive media have resulted in a steady growth in deceased donations. The government has announced its commitment to promote and coordinate deceased donation by setting up the National Organ and Tissue Transplant Organisation. The Prime Minister, through one of his recent radio dialogues with Indians, urged them to pledge their organs after death.

Hundreds of ordinary Indians have consented to part with the organs of someone very close to them even in moments of intense grief to help others who they do not know at all. Parents have donated the organs of their young children who have died sudden tragic deaths. In turn, thousands of Indians dying from end stage disease of various organs have got new leases of life. Surprisingly, families often independently advocate for donating organs on being informed about brain death of a loved one, without being approached by health care providers.

With increasing awareness of opportunities for transplantation, the number of patients wanting to receive organs from deceased donors has grown, widening the demand-supply gap. For example, the current waiting period for kidneys from deceased donors is 8-10 years, and more than 70% of those waiting for livers die without receiving one. The improvement in deceased donation has been patchy, and compared to global standards, consent rates remain very low, especially in public hospitals.

This has generated debate about ways to increase deceased donation rates and suggestions of providing some form of incentives or support to family members of those whose organs are donated.

Why giving incentives is a bad idea

At first glance, such gestures may seem charitable or even fair, as a reward for a family in recognition of the benefits that donation gives to transplant recipients and the healthcare system and community more generally. But in our view, such proposals raise serious ethical and legal concerns, and are unlikely to achieve their intended goal of helping more people to obtain organ transplants.

Those of us who have worked in the field of organ transplantation have every reason to believe that deceased organ donation by ordinary Indians is a selfless act motivated by the desire to help other people in need. Year after year, when family members of donors are felicitated on public platforms, they have spoken about how they decided to donate their loved ones’ organs without any expectation or a financial reward. For donor families, the opportunity to consent to donation is a source of comfort at a time of grief and loss. For some, the rewards of donation include being able to fulfil social or religious duties to help one another.

Also, the majority of transplants in India are currently performed in the private sector. Consequently, it is largely the well-off who access them, benefiting from the gifts of those who donate. If the idea of compensation for donor families becomes normalised, it will be tempting for individual patients dying from end-stage organ failure or institutions participating in transplantation to offer financially beneficial rewards as incentives to donor families while obtaining their consent for transplant.

In any case, free education for children and free healthcare for families with limited resources are the essential responsibilities of a welfare state. Placing these state duties in the context of rewards for donating organs, however well intentioned, is incongruous.

Donating blood, eyes, or other organs, is one thing that people may do regardless of their social or financial status.

Global standards

According to the globally accepted principle of financial neutrality for organ donation, the act of donation should be neither financially harmful nor beneficial to donors or their families. Once brain death is declared and consent for donation obtained, the actual costs of maintaining the donor in the intensive care unit to enable organs to be recovered for transplantation, and the process of retrieving the organs is not borne by the donor family.

International guidelines, such as those established by the World Health Organisation and the Declaration of Istanbul on Organ Trafficking and Transplant Tourism are opposed to proposals such as those currently mooted in India, which is a member state of the World Health Assembly that endorsed the WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation.

“Organs should only be donated freely, without any monetary payment or other reward of monetary value.” The Declaration of Istanbul Custodian Group (DICG), which works to promote the Declaration of Istanbul, in its position statement on the issue of payments to donor families argues that “Providing money to people to encourage them to consent to organ removal or reward them for doing so weakens donation programs… exploits the economic vulnerability of… deceased donor families, and undermines equality and justice by reinforcing rather than reducing socioeconomic inequities.”

— Statement of the Declaration of Istanbul Custodian Group regarding payments to families of deceased donors

As highlighted by the Declaration of Istanbul Custodian Group, the international experience of incentivising deceased donations has not been encouraging. For example, donor families are offered as much as $15,000 (about Rs 10 lakh) in Saudi Arabia, but consent rates for deceased donation there have not changed since these rewards were introduced. The countries that perform best in donation, such as Spain and Croatia, do not offer incentives to donor families.

Caution advised

This is not to say that India should not creatively modify international policies in promoting organ donation. But, given the deep social inequities that still provide fertile ground for the organ trade, we should be even more cautious than other countries before proposing anything that may be on the slippery slope towards organ commerce.

The Indian state can boost deceased donations in many substantive ways, including funding awareness campaigns, training transplant coordinators, and putting in place processes in hospitals to maximise identification and utilisation of suitable organs from deceased donors. It can improve access to transplantation by ensuring access to technology and medications to all sections of society. Like the National Dialysis program, transplantation activity could be established and promoted in the public sector, giving public hospitals a stake in promoting deceased donations, as the hospital in which the donation takes place has priority for transplanting the organ. Most importantly, this will increase access for the poor to receive organs.

This would be the most compassionate and enduring reward to the ordinary people of this country, who in spite of all the obstacles they face in Indian health care, continue to perform the astonishing act of generosity of donating life to other Indians in need.

Sanjay Nagral is senior consultant at the Department of Surgical Gastroenterology, Jaslok Hospital, Mumbai and the joint secretary of the Zonal Transplant Coordination Centre.

Vivek Jha is the executive director of the George Institute for Global Health India, professor of nephrology at University of Oxford and president-elect of the International Society of Nephrology.

Dominique Martin is a senior lecturer in health ethics and professionalism at Deakin University, Australia, and co-chair of the Declaration of Istanbul Custodian Group.