Changes to post-mortem protocols cannot solve chronic organ donation shortage in India
On November 15, 2021, the Indian government notified a change in the country’s post-mortem protocols. The new protocol allows post-mortem procedures to be performed after sunset. Prior to that, autopsies were performed before sunset, unless law enforcement specifically authorized them to be performed at night.
As a result, organs from many potential donors were not eligible for transplants because the window for organ harvesting and storage is short. The revised rules are expected to stimulate organ donation and transplants, facilitating timely harvesting after the post-mortem procedure.
With new protocols and legal changes, the government has worked to simplify and promote organ donation and transplants in the country.
However, despite these measures, India faces a significant and chronic organ shortage. This deficit has in turn led to the exploitation of the poor and vulnerable segments of society, the illegal organ trade and “transplant tourism”.
An unmet demand
There is a large gap between demand and supply of human organs and tissues in India. Rising rates of diabetes and specific organ diseases (especially the liver and kidneys) have also contributed to an increase in the demand for organ transplants.
According to the Global Observatory on Donation and Transplantation, India performed the third highest number of transplants in the world in 2019. At the same time, India reported a dismal organ donation rate of 0, 65 per million inhabitants.
A number of reasons have been identified to explain the shortage of organ donation in the country. There is a lack of awareness among the population about the organ donation process, which gives rise to superstitions and misconceptions about the practice. Religious constraints and infrastructure issues are also barriers to organ donation.
Protocols for declaring someone “brain dead” are also unclear and vary from hospital to hospital. This results in confusion and delays.
Brainstem death has been linked to organ donation in India and is mentioned in the Human Organs and Tissues Transplantation Act 1994. But it has no place in the 1969 Birth and Death Registration Act. In a situation where the family of the person declared dead from the brainstem is unwilling to donate their organs, hospitals are unsure of whether to continue ventilatory support, which often leads to prolonged ventilatory support.
This creates an ethical and legal dilemma – whereby a person is only considered deceased if the family agrees to donate the organs and their respiratory support is withdrawn. But if the family does not want to donate the organs, the person continues to be ventilated.
Gender gap in organ donation
Gender plays a role in organ transplants, as is evident when we look at the data on organ donation. An analysis by Dr Vivek Kute, professor at the Institute of Kidney Diseases and Research Center-Institute of Transplantation Sciences, Gujarat, found that 78% of living organ donors in India were female. But unlike their overwhelming representation among organ donors, their share among organ recipients was a dismal 19%.
The biased representation of women in organ donor figures has its roots in preconceived gender roles. Care work is often seen as a woman’s primary responsibility, and these social conditions indirectly compel women to donate their organs when a family member is in need.
When a country performs poorly on gender equality, it is reasonable to expect larger gender gaps in organ donation. If women do not have the same economic opportunities as men, they will be expected to be donors. This is because organ donors are required to take time off work for surgery and recovery.
The organ shortage and the fact that only people related to a person in need can legally donate their organs inevitably make it difficult to find a suitable donor and open the door to the illegal organ trade.
In 2002, researchers in Chennai interviewed 305 people who had sold a kidney and found that 60% of the women surveyed and 95% of the men surveyed worked as laborers or street vendors. In addition, 96% of those surveyed had sold their kidneys to settle debts. And 95% said wanting to help someone who is sick was not a big factor in their decisions.
The COVID-19 pandemic is expected to only worsen the situation. There has been a significant drop in the number of deceased organ donations due to fear of infection and an overburdened healthcare system, which has made recipients more desperate. On the other hand, more informal workers who have taken on more debt due to lack of employment may have decided to sell their organs to make ends meet.
As such, the pandemic and our government’s response to it presented a “good” opportunity for economically vulnerable citizens to sell their organs.
According to the Istanbul Declaration on Organ Trafficking and Transplant Tourism, transplant tourism is the “movement of organs, donors, recipients or transplant professionals across jurisdictional boundaries for the purpose of organ trafficking and transplantation trade ”.
Even though transplant tourism has raised ethical concerns, it still accounts for 10% of all organ transplants worldwide. The global shortage of organs available for transplantation has prompted many people in the West to seek transplants abroad, often in developing countries.
According to the WHO, India is one of the four best-known organ-exporting countries where foreign nationals seek low-cost medical care and relatively easier access to organs.
The international movement of organs is often organized or facilitated by intermediaries or health care providers who travel and recruit donors in economically developing and underdeveloped countries. Organ sellers are recruited through advertisements in local newspapers, “scouts” or directly through medical institutions.
Recently, the Internet has been used more and more to attract foreign donors. Several websites offer all-inclusive “transplant packages”.
At the same time, medical reports have indicated that not all organ recipients or buyers benefit from this illicit trade in organs. Due to substandard medical practices, there is a high frequency of medical complications, including transmission of viruses, among organ buyers.
In India, organ transplantation is mainly carried out by private hospitals and is a major source of income for them. Some hospitals are known for their large volumes of “international” transplants. The media have also reported that private hospitals in some states prefer foreign recipients to Indian transplants on organ waiting lists. But prioritizing foreign citizens over Indians is not justifiable as 5 lakhs of people die each year from lack of transplantable organs.
Recently, the Indian government implemented the National Organ Transplant Program to promote organ donation by the deceased, in order to reduce the existing gap between demand and supply. While such efforts are valuable, they are not enough to solve the complex issues of organ transplantation in India.
The result of such a severe and chronic organ shortage as described above in India has encouraged some actors to commercially exploit the poor and vulnerable segments of society and to put pressure on women to do so. donate their organs. At the same time, tough legislation only stays on paper, and India remains one of the world’s epicenters for organ trafficking.
There is a complex web of intermediaries that connects desperate recipients with financially desperate donors, and this needs to be corrected. One of the solutions is to put in place a strong regulatory mechanism to hold healthcare professionals and intermediaries accountable. Competent authorities should continuously check donors and recipients and their relationship, in order to combat misrepresentation.
In addition, all transplant centers and hospitals should provide preventive and postoperative donor care, and this care should be documented and audited.
In addition to developing a fair and transparent system, we also need a uniform definition of “death” to ensure consistency in medical care, whether or not organ donation takes place. This will involve separating “brain deaths” from organ donation and including them as a form of “death” in the law on registration of births and deaths.
Arushi Raj and Neha Chauhan are research associates at SPRF India, a New Delhi-based political think tank.