'Kidney buyers don't understand the risks involved'

'Kidney buyers don't understand the risks involved'

February 20, 2008 | 20:32 IST

The multi-crore kidney scandal in India has triggered a debate among biomedical ethicists on organ transplants.

Dr Leigh Turner, associate professor in the Biomedical Ethics Unit and chair of the Master's Specialization in Bioethics, McGill University in Montreal, asks: "Why should we emphasize on just one individual when kidney transplants are a global phenomenon?"

"It is strange," Dr Turner told rediff.com, "that the entire focus is on this one man: 'Dr Horror' (as Amit Kumar, the alleged mastermind of a global kidney racket, has been dubbed in the media). Why should people go to other countries and opt to get the transplant without even realizing the health risks? I believe that will be a great story."

In an interview, the medical ethics expert discussed India's kidney scam with Senior Editor Ajit Jain. Here are some excerpts:

What are the ethical questions in the kidney scam in India?

I understand that one problem in Canada, the United States, and elsewhere is long delays for kidney transplant. The wait time varies -- four, five years, up to seven years and even beyond that. Many people do not survive those delays. There is a kind of desperation or fear that motivates them to go to Pakistan or India for transplants. It is important to try and understand that.

Somebody who has done that (gone to another country for a transplant) wants an understanding of his situation also. This person should bear in mind there are a lot of risks he might not know about. There are companies that arrange these transactions. They usually argue: 'Come to India, come to Pakistan. There are no risks receiving a transplant; very little chance of anything serious happening.'

The fact is there is no proper discussion of risks involved. Often they come back with no real documentations, no medical records from where the transplant was performed. There is also the problem of inadequate testing. Such facilities -- whether in India or elsewhere -- don't have tremendous resources. There could be serious health problems. There are high risks of mortality.

The individual receiving the transplant may come back with infectious diseases: hepatitis B, hepatitis C, HIV, malaria, tuberculosis.

What about the ethical question?

You can look on the Internet how transplants are sold. These vendors say: 'It will do you good and risks are nonexistent.' To me, that is breach of honest disclosure. In fact, there is greater risk in acquiring a commercially-obtained transplant. People are not told about the risks; you have to pay $85,000 or more.

Let us focus on the other end: Here is a very poor individual who is selling a kidney. What are the consequences for this poor man who sells the kidney or is coerced to do so? He works in the field or a factory. After losing his kidney he can no longer work there.

There's also the question for this man, say from North America, who goes to places for a kidney transplant. What are the consequences for this person? Health risks, as I described. For transplant recipients, there can be an outcome they were completely unaware of, and other consequences.

What about the kidney seller?

One of the disturbing ethical issues is what exactly are we talking about here? Are we talking about the individual who is faced with the tough choice of selling his kidney because of his economic circumstances? He is very impoverished. By selling his kidney he is hoping to improve his economic circumstances a little bit.

What happens in India? Is this poor individual selling his kidney in order to have some kind of economic livelihood or in this case, as the reports indicate, are we talking about much more coercive methods? There are reports coming out of India that say people didn't choose to go to sell their kidneys; they were forcibly taken there or they were misled that they were going to get a job, and then at gun point their kidneys were removed.

What do you make of such reports?

It is possible people were forced to go there and forced to have their kidneys removed. But, at the same time, there are transplant laws in India. It is illegal not only to buy a kidney but to sell it as well. So anyone who was trapped by the police on site might just say that this was not a voluntary act of selling their kidney, that they were forced to be there.

So, what do we make of those stories? At least I am hesitant to draw any conclusions. If their kidneys were forcibly removed, that sounds to me more like traditional forms of organized crime -- trafficking, but in kidneys.

If we say we are not sure and people are saying this -- that they were forced to sell their kidneys -- to protect themselves, then the other side is they were forced by their economic circumstances. These are still ethical issues as it is not their free choice to sell their kidney. We are talking of persons who are forced by economic circumstances to sell their organs; $2,000 in India and Pakistan is a lot of money for some people, a significant return on their kidneys.

But, in fact, it is not that the money (paid by the transplant recipient, often as much as $85,000) is going to this poor man selling his kidney. Doctors, brokers, hospitals take the cuts. The individual gets between $1,000 and $2,000; sometimes even less. It is not legal and all transactions are under-table deals.

There are two big studies on this subject; one in India and one in Pakistan. Those studies say there is absolutely no long-term benefits to this poor man. What seems to happen is they are pressured by debt collectors to sell their kidneys. So that money from the sale of the kidney doesn't go to change the lifestyle of this person -- to start a business and change his financial condition -- it goes to the debt collector.

They remain poor or in fact poorer than what they were before. Now they have health problems. Their kidney has been removed and the work they were doing -- pulling a rickshaw or making bricks, or (other such) demanding physical labour -- they can't do that any more.

What if the sale and transplant of kidneys is legalized?

When an economist looks at the black market -- the underground economy -- one of the arguments put across is you can't stop buyers and sellers getting together. What you can do is to set up administrative practices to regulate those transactions. So, there are many commentators, bioethicists, persons from other disciplines, who say exactly what you said that changes could be made in legislation. That instead of allowing it under the table we should legalize the market and bring some order and control.

They are suggesting through legislation we have to set up administrative bodies to make sure individuals selling kidneys are clearly told of the risks involved. We have also to make sure there's adequate compensation. Let these administrative bodies be government run, that's definitely one response.

Liberal lawmaker Borys Wrzesnewskyj has introduced a bill seeking sanctions against Canadians going for transplants to other countries. I am not sure what to think of this legislation. An individual who is going offshore and purchasing a transplant, should we feel more sympathetic towards them than someone who goes to Bangkok and has sex with a 12-year-old? I think it is important to have extraterritorial legislation for someone who commits that crime [paedophilia].

An extraterritorial legislation for an individual going offshore for a kidney transplant, I don't know what to think of that. I don't think of them the same as someone having sex with a minor. I am familiar with the proposed legislation, but I would not describe myself as a full supporter of it. At the same time I can understand the impulse of having a new legislation to try and regulate what's happening.

Why should these people go offshore? They have been waiting five years or more for a transplant. There's a kind of desperation here. So, you would be looking sympathetically at such individuals?

What have we learnt from the Dr Amit Kumar incident?

I am surprised there is so much attention to this story when it is going on in many countries. You can go to the Internet and find out how to get a kidney transplant in Pakistan, or arrange one in the Philippines.

Sadly there's so much of focus on one person and this one kidney transplant ring. Actually, it is a global phenomenon.

I think there are other dimensions to it that we are ignoring that should get more attention. India has prohibited kidney transplants -- buying or selling of it. Pakistan has done likewise. Passing a legislation to regulate the trade is important but legislation alone is not going to end the black market.

That's where the enforcement agencies need to play a role. There is also an educational dimension to it. Many people selling kidneys don't understand the implications. Likewise, people going and buying it don't understand the risks involved, including the criminal side of it.

Any suggestions for those awaiting transplants desperately?

There are more and more individuals waiting for years for transplants. We are not talking of individuals inclined to be criminals. My guess is there are only a few individuals who are going and buying transplants in another country.

If the waiting time was shorter and there was greater access to kidney transplant here, people will not go offshore. So I think we need to be less focused on Kumar and talk more about are there things in Canada that we can implement? We must try to increase the number of kidneys available for transplants, to reduce the number of individuals going to another country and resorting to the blackmarket. These are some steps worth exploring by health authorities here.

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