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Will the law against organ sale remain a moral victory?

By Sandhya Srinivasan

When India passed the Transplantation of Human Organs Act banning trade in organs, those who had agitated for the law may have thought they had won the battle. Instead the kidney trade has only flourished. The public is being told that the only way to put a stop to the kidney trade by people such as Amit Kumar, who has been running a global trade in organs since 1994, is to regulate the market for human organs

 Every few months we read of poor people being persuaded to sell a kidney for a few thousand rupees, of villages where the entire adult population has only one kidney and a scar where the other one was. Well-known hospitals and doctors get in the papers for colluding in the sale and transplant of these organs, working with brokers and hospitals. Some people get arrested and some hospital licenses are suspended. A few months later everything is forgotten.

The arrest of Amit Kumar (also known as Santosh Raut) has shocked the world, mostly because of the reach of his empire and the extent to which he had streamlined the business of procuring and marketing human organs.

He had a five-state network for buying kidneys from poor people who were desperate for money to repay debts. He sold these kidneys to rich people with end stage renal disease from countries around the world. He offered an all-inclusive package to his customers, starting from a taxi service from the airport. Kumar is not a qualified surgeon; the medical procedures that he offered would have involved collaboration with surgeons and hospitals. He is reported to have earned Rs 5 crore in 2007. He is also reported to have invested in the Indian film industry, an industry long suspected of being a money-laundering avenue for the underworld.

The reports of the kidney trade leave no doubt about its criminal nature. Not only does this network exploit the desperation of the poor, there are many credible reports of people being forced into giving up an organ, or going for a medical procedure and having a kidney extracted instead. In other words it is no different from dealing in trafficking in drugs.

And like the drug trade, organ trafficking is big business. At least 15,000 transplants every year are done on people from rich countries buying organs from people in poor countries, according to the World Health Organisation. That’s not counting the domestic industry.

India and Pakistan each conduct about 2,000 kidney transplants from live donors every year. In 2003, the Sind Institute of Urology and Transplantation in Karachi concluded that about 80% of transplants in Pakistan were from unrelated donors and about two-thirds were on patients from outside the country -- “kidney transplant tourism”. We don’t know how many of the kidneys transplanted in India were bought from a “donor” but we can guess that what is true for Pakistan is also true for India.

Laws against commerce in human organs

Dr Samiran Nundy is gastroenterological surgeon at the Sir Gangaram Hospital in New Delhi. Dr Nundy was on the committee whose report led to the Transplantation of Human Organs Act (THOA), 1994. THOA banned paid transplants and made them punishable by imprisonment.

THOA limits live transplants to three categories: relatives by blood, spouses, and those who donated “out of affection”. State authorisation committees are meant to scrutinise all applications for unrelated transplants. Hospitals conducting transplants are supposed to be registered with committees which are also supposed to monitor their functioning.

Those who have campaigned for a law banning the organ trade point out that the law is a major achievement. Dr Farhat Moazam, professor and chairperson of the Centre of Biomedical Ethics and Culture at the Sind Institute for Urology and Transplantation, Karachi, views the Indian law as a “moral victory, an important statement by (Indian) society”.

While this is true, we should be concerned that, in the 13 years since the law was passed, the Indian law has been observed more in the breach. Men married women to obtain a kidney and then divorced them. As well documented by a series of investigations in Frontline ( magazine, the “affection” clause is the loophole that actually drives the entire transplant programme in the country. In state after state, authorisation committees have rejected a microscopic percentage of applications under this clause, turning a blind eye to what are obviously financial transactions. For example, the Karnataka authorisation committee approved 1,012 of the 1,017 applications it received from January 1996 to February 2002.

Of course Amit Kumar did not even bother to create this paperwork, points out Dr George Thomas, editor of the Indian Journal of Medical Ethics. He ran his business as if the law did not exist.

Dr Moazam was instrumental in pushing through a similar law in Pakistan: the Transplantation of Human Organs and Tissues Ordinance, 2007. “I believe it is a step in the right direction,” she pointed out in an emailed interview. “But it needs to be strengthened in some areas and also implemented honestly and transparently if it is to work.”

The Pakistan Ordinance makes it mandatory for institutions doing transplants to register and be monitored, prohibits and provides punishments for commercial dealings in human organs as well as donation by Pakistani citizens to “citizens of other countries”.

Unfortunately it also permits donation by a spouse. It also permits “donation” by individuals who are not related by blood as long as it is “voluntary”. As the Indian experience has shown, such loopholes make a mockery of the law. “Evaluation committees” to scrutinise applications for transplants from unrelated donors are dominated by doctors, including transplant specialists. Dr Moazam has doubts about the interests of the Human Organ and Tissues Monitoring Authority to certify centres performing transplants. “The inspection committee has members (physicians) who were known to be involved in live unrelated transplants before the ordinance,” says Dr Aamir Jafarey also of the CBEC.

There was a dip in commercial transplants when the Pakistan ordinance was enacted. Mukhtar Hamid Shah, an ex-army surgeon who operated a transplant centre advertising the kidney transplant package, shut his website down after the law came into force. But “business is reported to have picked up” according to Dr Jafarey. “Another scam is transplant marriages with a European walking in with a Punjabi village wife eager to donate for her husband.”

The laws in both countries have come about because of the consistent efforts of a small section of committed medical professionals and in that sense they do represent a victory. Dr Moazam notes that “the Indian law has given you the teeth to go after those involved in this racket. Has it eliminated the practice completely? Of course not, no law does.”

Not one conviction under the law

The industry has always had the support of those in power, and those in power have ways to get their dirty work done, as illustrated by the story of Kumar’s career. Senior Delhi police officials have confessed to picking up one of Kumar’s associates in January, but letting him free in exchange for Rs 20 lakh – handed over by Kumar himself.

Further, Kumar has been running this business since 1994 at least. And surely this is not the kind of activity that can remain secret. He was first arrested (as Santosh Raut) in 1994 along with a group of surgeons and anaesthetists for conducting kidney transplants at the Kaushalya Ayurvedic nursing home in Mumbai. A government-appointed committee concluded that as many as 450 kidney transplants on foreign patients had been done in the nursing home from 1991 to 1994 though it had no license for conducting surgery. The committee noted that there were no medical records, evidence of consent or even evidence of basic medical infrastructure. When asked whether kidney transplant surgery could have been conducted in these circumstances, Dr Sunil Pandya, founding editor of the Indian Journal of Medical Ethics, said, “They say they did the surgery, the question is: what were the results? We don’t know.”

Kumar was arrested at least four times between 1994 and 2008 -- and obtained bail each time, following which he would disappear and resurface, running the same business in another part of the country.

Incidentally, not one of the doctors who were arrested in 1994 has been punished. One of them, who was attached to a government hospital at the time that he was arrested, now holds a senior post in that hospital.

Not one person is reported to have been prosecuted for violating THOA. “I do not have figures (of the number of people tried and convicted) but I think it is zero,” says Dr Thomas.

The story of a cadaver-based transplant programme

The commonly understood definition of death is when the heart stops beating. Some time in the 1960s a new definition of death was arrived at: “cessation and irreversibility of all brain function”. In the natural course of things brain death soon leads to the cessation of the heart beat. However, the body can be maintained on a respirator to permit the removal of organs for transplant – kidneys, liver and heart – that deteriorate as soon as respiration stops. The corneas, bone and skin can be removed within some hours after respiration stops. Medical professionals in India and Pakistan already have the technical expertise to use these organs and some hospitals have the necessary infrastructure to run a cadaver-based transplant programme.

Doctors have pointed out again and again that a transplant programme must depend on cadaver donation. Before 1994, cadavers could not be used for organ donation because, in the law, death was understood as the cessation of heartbeat. India’s Transplantation of Human Organs Act, 1994, recognised brain death, enabling the use of cadaver organs for transplant and the setting up of a cadaver-based transplant programme.

However, the cadaver-based transplant programme has not taken off in this part of the world. In India, doctors estimated that less than 600 organ transplants were from cadavers between 1994 and 2003. In Pakistan barely 20 transplants using kidneys from cadavers have been done in that country (and 14 of these with organs flown in from the Netherlands as part of an arrangement with an organisation there).

One reason is the lack of infrastructure to obtain organs as soon as they become available. “We need the infrastructure and regulations to harvest organs from smaller hospitals,” says Dr Nundy. This requires that all hospitals with intensive care units be registered as fit to harvest organs for donation. These organs can then be transferred for transplantation into the person at the top of a list of those needing transplants, prioritised according to their medical need for it. “Right now the cadaver itself must be shifted from the small hospital to a hospital registered for harvesting, which is ghoulish.”

Another is public awareness of the possibility of cadaver-based transplants and acceptance of the idea. “We need more publicity about cadaver donation, people don’t know what brain death is, and that organs can be harvested from the brain dead,” says Dr Nundy. “There is a poor understanding of brain death even among medical professionals,” says Dr Thomas. “We also need a system to seek and obtain consent from relatives of brain dead people.” According to Dr Nundy when a person is brain dead, doctors should be required to ask relatives for permission to harvest organs.

In Pakistan, there is a public perception that this practice is contrary to Islam, though there is no religious edict against the removal of organs from cadavers for donation.

One option to increase the number of cadaver organs is the possibility of “presumed consent”. Every citizen is considered a donor unless he or she specifically opts out. This has been criticised for its potential for abuse. “I would prefer the ‘opt in’ policy in India at present because the poor and less literate will not know that they can opt out,” says Dr Thomas.

“Development of deceased donor programmes at least in some of the major institutions to supplement living organ donation is absolutely essential to address the needs in Pakistan,” said Dr Moazam. “But this will require raising public and professional awareness, and education.”

Pressure for a regulated trade in kidneys

“The recently unearthed business is of a much larger scale than anyone imagined. Still worse, it has led to the rich clamouring for a law allowing regulated ‘trade’ in organs. And shockingly, some in the medical profession and the media are supporting this,” notes Dr Rakesh Aggarwal, gastroenterologist at the Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow.

If the kidney trade has the tacit support of people in power who profit from it, another concern is the attempt to build public support for a regulated trade. For years there has been local and international pressure to permit a government-regulated trade in organs as a way of meeting the demand for kidneys and giving the poor an opportunity to make some money. If people can sell sperm and ova, why shouldn’t they sell a kidney? In fact, the government’s failure to provide social welfare is given as a justification: if the government cannot look after its people, the least it can do is allow them to sell a body part. There have been proposals that organ “donors” be provided health insurance to ensure that they get proper healthcare after “donation”.

In ‘The hidden cost of organ sale’, in the American Journal of Transplantation in 2006, Sheila and David Rothman note that “Much of the enthusiasm comes from members of the transplant community, but it is also favoured by a growing number of economists and bioethicists who believe that the sale of body parts has become ‘morally imperative’. To be sure, the practice is explicitly prohibited by US law, rejected by the guidelines of almost every national and international transplant society… But never before has a market solution been so vigorously endorsed.”

Rothman and Rothman point out that such an argument in fact allows the government to abandon its responsibility to the poor: let them sell their organs instead. Surely this is not the way to bettering people’s economic conditions. “Were there no organ shortage, no one would propose kidney sale as a way of equalising economic conditions.”

Finally, a regulated organ sale is contrary to ethical medical practice. While all donors face some risks, one can argue that these risks are mitigated when the donation is made out of altruism. However, in a commercial transaction, the doctor is party to an income-generating activity that puts the donor at risk. This goes against the fundamental principle of medical ethics: to do no harm.

Proponents of a regulated organ trade argue that in Iran where a government-regulated trade has existed since the late-1980s, the waiting list for kidney transplants has disappeared. However, others point out that the regulated trade has undermined efforts at a cadaver-based transplant programme. Organ donors are poor men who do it for the money alone. There is no follow-up on how they fare medically or economically.

An Indian study published in the Journal of the American Medical Association has better information on what happens to organ “donors”. In the 2002 JAMA article, Madhav Goyal and others interviewed 305 kidney “donors” in Chennai and found that though 96% sold their kidney in exchange for an average of $1,070 to pay off a debt, the average family income declined after the surgery, three-fourths of participants were still in debt six years down the line, 86% reported a deterioration in health and 79% would not recommend that others sell a kidney.

The Kumar/Raut organ trafficking has moved off the front pages and will soon be out of the public’s memory. Before the next one comes along, we should know a couple of things.

First, the interests behind the kidney trade are powerful enough that when sincere medical professionals campaign for a law, loopholes are introduced to enable its abuse, and the trade has thrived because the law enforcers allow it to thrive.

Second, the regulation of the kidney trade is not a more ethical alternative; it has been proposed by the same people who have profited from the trade. It is frightening when it is also proposed by medical professionals, and even more frightening when “ethical” justifications are used and when some in the media generate public support for a regulated trade.

“In my opinion, organ trafficking involves societal and global issues that must be discussed within the broader paradigm of global injustices,” said Dr Moazam. “It must be a debate about communities of one kind of people being systematically exploited by communities of other kinds, both internationally and intranationally.”

InfoChange News & Features, February 2008