The Indian kidney bazaar
- From: Muhammad Javed Iqbal <kaleemjavediqbal@xxxxxxxxx>
- Date: Sat, 13 Sep 2008 00:08:19 -0700 (PDT)
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.
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.
The advantage of the kidney is that it is a paired organ and it is
possible to remove one of the kidneys from a live person. The
procedure is called "living" kidney transplant. This is usually done
from a close relative since such a person is genetically similar and
is also likely to donate the organ for altruistic reasons. The
operation involves a very small risk of a major complication to the
kidney donor, but this is regarded as sufficiently rare to permit such
transplants. In the developed world another form of donors called
"cadaver" donors have been used for obtaining organs. In the initial
stages, removing organs from an individual who was "dead" as per our
classic understanding of death i.e. when the heart had stopped, was
attempted. This was largely unsuccessful since for an organ to be
viable it had to be removed within minutes of cessation of heartbeat,
which was an impractical proposition.
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.
The medical profession continues to respond with deafening silence to
the exposes. Significant parts of the profession, especially those
involved with transplantation don't see anything wrong with unrelated
transplantation.
It is pertinent to note that the medical profession continues to
respond with deafening silence to the exposes. This brings us to an
important aspect that has probably escaped attention earlier. It was
understood that this silence was just a reflection of the profession's
disinterest. However, after discussions and interactions with the
medical fraternity, what comes across is that significant parts of the
profession, especially those involved with transplantation, don't see
anything wrong with unrelated transplantation. The end justifies the
means and the means don't matter. This is crucial to the whole issue.
For if the most important players in transplantation themselves are
not convinced that the practice of medicine in general and
transplantation in particular must respect certain social ethics, then
any number of laws can be circumvented and in turn rationalised.
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
Combat Law, Volume 4, Issue 4
Dr. Sanjay Nagral is Consultant Surgeon at Jaslok Hospital & Research
Centre, Mumbai. http://www.indiatog ether.org/ combatlaw/ vol4/
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