For decades India has been known as the 'great organ bazaar' and has become one of the largest centres for kidney transplants in the world. Dr. Sanjay Nagral traces the history of the organ market and the lack of medical ethics that has made it a thriving business.
Combat Law, Vol. 4, Issue 4 - Indian public life is riddled with scandals. One such scandal that distinguishes itself by the way it repeats itself with amazing regularity and hits the headline every few years is the scandal of the Indian kidney bazaar, as crudely described at some stage in its history. The desperation, ingenuity and collusion of the players involved have made India a hot destination. The trade shifts from one city to another as if in planned rotation. A few years back it was Noida, Amritsar, Mumbai and the latest expose comes from Delhi, where leading doctors from reputed hospitals were arrested for their involvement in an organised racket. Most of us are aware of the classic ingredients of this plot when it is exposed every few years; desperate (and often rich) patients, organized gangs of middlemen luring poor and gullible individuals and 'reputed' and 'successful' doctors and institutions feigning ignorance when raided and arrested.
The beginning of organ transplant
To understand the issues surrounding this trade, it is essential to look at the background of organ transplantation. Transplantation is one of the most spectacular achievements of modern medical science. With the first successful human kidney transplanted between two identical twins in 1954 by surgeons at the Brigham and Women's hospital in Boston, the field of transplantation exploded. Medical advances have contributed tremendously to its success ratio and have led to a significant increase in the number of transplants being performed. Around 50,000 such transplants are performed annually. The management of end-stage disease of various organs like kidney, liver and heart has thus undergone a paradigm shift. Transplantation is no longer regarded as experimental but established standard therapy by WHO.
In the last three decades, the concept of "brain death" i.e. a state where the brain is irreversibly damaged but the heart is beating, came into being in the western world. 'Death' as we understood it over the years was redefined. 'Brain Death' represents a state of irreversible damage to the brain, which over a period of time (12 to 36 hours), leads to cardiac arrest. This is typically seen in patients with severe head injury, massive stroke, brain tumors, brain hypoxia, and as a complica tion of neurosurgery. Such brain dead individuals or "heart beating donors" are in intensive care units on artificial respiration and removal of organs from them is performed as an operative procedure.
French physicians first described the concept of brain death in 1959, before the era of organ transplantation. However it was then legalised and popularised due to its implications for organ transplantation. Till recently 47 countries in the world had accepted "brain death" as a legal concept and 39 countries had enacted specific laws on organ transplantation. The form and method of obtaining consent for removal of organs from brain dead individuals has varied. Generally, two forms of consent have been practiced. The commonest form of consent is "informed consent" in which close family members agree to donate organs of the deceased after "brain death". The other form of consent is called "presumed consent". This grants authority to doctors to remove organs from brain dead individuals whenever usable organs are available in the absence of objection from the deceased in his or her lifetime or family members. This system has been legalised in European countries like Austria, Belgium, Denmark, Finland and France. A majority of transplants in the developed world are now done using cadaveric donors with a minority of kidney transplants performed from living donors.
The Indian Scenario
Living "related" kidney transplants have been performed in India for the last three to four decades. The immediate results are comparable to international standards but long-term results are poorer. However a large majority of renal failure patients in India are on long-term dialysis, an alternative inferior to transplantation.
The kidney bazaar has a long history in India. Right from the eighties when kidney transplantation was established in India, doctors in large hospitals have been performing living "unrelated" kidney transplants where typically kidneys were bought from the poor through middlemen. The early nineties saw a series of media exposes of how rich patients, especially Arabs, were coming to India to buy kidneys giving the required international touch to a thriving kidney trade.
Till the enactment of the Human Organs Transplant Act (HOTA) in 1994, there was no comprehensive legislation allowing the removal of human organs from brain dead cadaver. In 1991, the Government constituted a committee to prepare a report, which could form a basis for all-India legislation. Although the main terms of reference of the committee were concerned with "brain death", it also recommended that trading in human organs be made a punishable offence. The Act legalises 'brain death' making removal of organs permissible after proper consent. Although there have been a few hundred such cadaver transplants in the metros in the last two to three years, the numbers are still below what was expected or what is needed.
The Act also seeks to regulate "unrelated" live donation of organs and makes commercial trading an offense. HOTA makes it mandatory for institutions conducting transplants to register with an authority appointed by the state government. The authority will scrutinise donations to ensure that there is no commerce involved. This authority will also enforce standards, investigate complaints and inspect the hospitals regularly to monitor quality. Persons associated with hospitals conducting transplants without proper registration are liable for punishment. Thus, it is probably for the first time that an external body has been given legal powers to scrutinise and monitor the activities of medical institutions and donors.
Trading in organs
For a few years following the passage of the Act, commercial trading either decreased or went underground. The discovery of organized rackets in NOIDA on the outskirts of Delhi and in Karnataka in 1998 made it apparent that it had resurfaced with a vengeance. The difference lies in the ingenuity of the players. In the last few years, the buying and selling of organs has taken on a new and peculiar form. The unrelated donor and the recipient now file an affidavit in front of the authorisation committee stating that they are emotionally related and therefore the transplant should be allowed under the clause of altruistic donation. It is another matter that most often the donor is obviously a poor uneducated person and the recipient a rich individual. Figures show that nine out of ten times, the committees grant such requests.
In other words, these so-called altruistic donations are now allowed by a clause in the law. Thus what was once considered unethical and illegal now has official sanction making the state-appointed authorities the new players in the kidney bazaar. In a series of articles last year, a leading news magazine wrote about how in South India, state authorisation committees, instead of being watchdogs had become colluders in the game of unrelated donation.
Over the last few years the media, health and social activists have attempted in various ways to expose the trade. The passage of HOTA itself was partly in response to pressure from the media and activists. Other measures include demands to medical councils to take suo moto action, which has been ignored so far and calls made by medical associations to their members to uphold ethical values and not participate in such actions.
The complete failure of the law on one hand and a lack of professional ethics on the other make it essential for different and more imaginative strategies. These could include tightening the clause that allows unrelated transplantation, including members of NGOs and public organisations in the authorisation committees, a greater transparency in their working, mechanisms for granting exemplary punishment to, and professional isolation of those found guilty. Usually most of the players, especially medical professionals, have escaped and have been successfully rehabilitated. Promotion of the alternative of cadaver transplantation is also needed but this by itself cannot fulfill the need for organs. In any case buying of organs would still be an easier way out for those who have the resources. Given the potent mixture of desperate patients, willing medical professionals, the availability of poor and helpless donors and a complete failure of monitoring agencies, many of these strategies are unlikely to succeed easily.
This philosophy is also a product of the growing ethos of commercialisation of medicine in India, an ideological swing towards a market economy that has suddenly acquired new respectability. More importantly, it now has the tacit support of the State. A closer look at the organ trade shows the extent to which it takes place in the private sector with the state authorities as tacit partners. In some cities including Mumbai, this has led to the collapse of speciality departments in public hospitals, which were once very active. In a related development, a section of the transplantation community actually published an argument in leading medical journals that since "we now buy and sell everything in society, why not organs?" The fact that they could be so brazen about it reflects on the permissiveness of the new economic climate.
The battle needs to be fought at two levels. Besides law and monitoring agencies, there is a need for an ideological battle against what is essentially a human rights violation and a form of social exploitation. This is only possible if a coalition of political and people's health movements and those within the medical profession, who acknowledge both these levels, fight this battle. However, with the retreat of ideology both in politics and in the profession, this is going to be a difficult task. It is unfortunate that in the last few decades, organ transplantation has become associated with commerce and not healing. For those who still believe in the Hippocratic oath, it is indeed a daunting task to swim against the rising tide.
Dr. Sanjay Nagral
Dr. Sanjay Nagral is Consultant Surgeon at Jaslok Hospital & Research Centre, Mumbai. Write the author
Vol #4, Issue #4, Combat Law
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