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Joint Standing Committee on Foreign Affairs, Defence and Trade
Organ tourism

CHAPMAN, Professor Jeremy Robert, AC, Private capacity

FRASER, Dr Campbell, Private capacity

MARTIN, Dr Dominique Elizabeth, Co-Chair, Declaration of Istanbul Custodian Group

O'CONNELL, Professor Philip John, Immediate Past President, The Transplantation Society

Subcommittee met at 12:44

Evidence was taken via teleconference—

CHAIR (Mr Andrews): Welcome. Thank you for participating in this meeting. Can I indicate at the outset that the conversation is being recorded for Hansard, but that is only for our private use; it is not for public use beyond that. As you know, the Human Rights Sub-Committee of the foreign affairs committee is looking into this question of organ trafficking and illegal transplants. We have had some evidence from the Falun Dafa Association. We have also had evidence from David Kilgour and David Matas. In addition to that, the Department of Foreign Affairs and Trade, the Department of Health and the Attorney-General's Department have met with us and indicated various views of theirs about the issue. So, thank you for being involved.

Some of what we are trying to do, I suppose, is to get to the facts as best we can in this regard, because there are various estimates of use. But could I ask: to what extent do you think Australians are engaged in commercial organ trading? And secondly, if that is the case, how many travel overseas to receive organs and indeed how many, if there are some, go to China?

Prof. Chapman: Maybe I could give the ANZDATA collected facts as we collect them from around the country, and then perhaps Dr Fraser can talk about the individuals he has met. The Australian and New Zealand Dialysis and Transplantation Registry captures all the data from all the renal units around the country. We audit it. It is around 99 to 99.5 per cent complete. We have since 2006 collected data on patients who have returned for care to Australia with a functioning transplant or with a transplant that they have had overseas that has failed and they have returned for dialysis treatment. Those numbers are recorded in ANZDATA, and for 2006 to 2015 they are five, 11, four, eight, four, seven, four, three, three and six. That is 55 in 10 years.

Based on our own experience at Westmead, about a half to a third of those are perfectly legitimate. If you take me, for example, if I need a kidney transplant I have two brothers. They are both in the United Kingdom. I might choose to travel to the United Kingdom for my transplant rather than have my brothers come to Australia for the transplant. I would come back for care. So, about a third to a half of the 55 are highly likely to be legitimate. The other two thirds to a half are suspicious. They are almost all individuals who are permanent residents here or citizens here who returned to their country of origin and most claim, when asked, to have received a transplant from a relative in that country, and that becomes almost uncheckable—well, it is uncheckable. So, we have a high degree of suspicion for perhaps 25 to 30 people in Australia over the past 10 years.

What we do not collect, of course, is the number of people who go overseas and stay overseas or who go overseas and die. There are relatively few individuals who go overseas, receive a transplant, come back and do not come to a major hospital for follow-up because, until recently, they have not had access to the medications that are needed for long-term care. So, that is the recorded data that we have in Australia.

CHAIR: Dr Fraser, did you want to add to that?

Dr Fraser: Yes. The figures are in keeping with the information I have gathered. I have information on 19 Australians who have travelled overseas in the last 10 years. I have certainly not been able to capture all of them, but these are the ones I have managed to catch up with and have a brief interview with. I can certainly say that most of the Australians who have purchased an organ overseas have ethnic family connections to the countries or regions where they buy their organs—Pakistani Australians tended to go to Pakistan, Egyptian Australians travel to Egypt, and so on. So where they have this family connection, because the families can arrange it for them, they are going to those countries. People going to Egypt is our main concern at the moment.

What I would say, though, is that less than five per cent of Australians who are waiting on organs are likely to even consider going overseas. But, if we look at our neighbouring countries—Indonesia and Malaysia—of those patients who can afford to purchase an organ maybe up to 50 per cent will get a formal referral from their doctors to an overseas transplant centre. That is absolutely unheard of here in Australia. Where you have developing countries where there is no robust deceased donation system, people in these countries are far more likely to be buying organs in a third country than patients who are coming from Australia, from the US or comparable countries. So, although we are trying to show a good example to our neighbouring countries, it is our neighbouring countries that have the big problem—it is not really here in Australia. Jeremy, do you agree with me on that?

Prof. Chapman: Yes, absolutely. In terms of transport, we recently had a meeting at the Pontifical Academy of Sciences, sponsored by the Pope and by the pontifical academy, and we went through the countries where commercial transplantation is occurring: Egypt, Turkey, Pakistan, possibly Lebanon, India, Sri Lanka, possibly Singapore, Cambodia, Vietnam, Laos, China, Mexico and Venezuela. They are, if you like, our target list of countries where commercial transplants are taking place. They are mostly typified by having high inequality scores, by having low economic human development indicators and by having a large source of impoverished individuals on whom to prey for donors. The transfers of both donors and recipients to third-party countries, which was prevalent in the early 2000s seems to be a lesser problem now.

Dr Fraser: I would agree.

CHAIR: In terms of China, either from your own knowledge or from knowledge that is broadly shared within your quarters—you mentioned the conference—is there any sense of what the numbers of organ transplants that take place in China are?

Prof. Chapman: From the Pontifical Academy of Sciences data, the numbers of transplants being performed in China for foreigners has collapsed. In 2008-09, it started to collapse and in 2011-12 it was still continuing. There is data from a variety of sources, including the Middle East, in particular. There is good data from Saudi Arabia as to where the patients from that country are going, as there is from Kuwait. Malaysia has good data. They have all turned away from China. As Campbell said, Egypt is a predominant destination. Pakistan has reappeared and Sri Lanka has appeared.

Dr Fraser: Foreigners can no longer enter China for transplantation. I have interviewed several patients who tried to go to China and were knocked back—they were not able to go. I have just returned from China; I spent the last three weeks in China and Beijing. I met with the key players in transplantation from the Ministry of Health. They are clearly moving towards an ethical, deceased donation model. There are still some isolated cases of executed prisoners' organs being used, but there is no evidence whatsoever that any of those organs are coming from prisoners of conscience. I can find no evidence of that whatsoever. They are clearly working in a transition away from reliance on executed prisoners to organs through a deceased donation model.

I have found some cases of commercial live donations taking place in China, but they are just isolated cases that are taking place within the Chinese market. What we have to realise is there is a major difference between using organs of people who would have been executed anyway and the claims are that certain groups are being rounded up and killed for their organs—they are completely different things. While there are still some limited use of executed prisoner organs within the Chinese population, there is no evidence that individuals are being executed specifically for the purpose of organ procurement. Jeremy, do you want to add?

Prof. Chapman: No. I would agree with that. There are practices in China which have yet to be resolved in two or three politically powerful hospitals. The rest of the environment has realised that the organ transplantation rate that can be achieved from the small numbers of executed prisoners is far outweighed by managing deceased organ donation from the intensive care units, and they have swung their efforts to building large networks of intensive care units from which organ donation may occur. I think the financial environment in China for family donation is not what we would approve of here. There is an encouragement to donate from the family by financial incentives. That is a completely different set of circumstances and issues, which have also to be tackled on a global scale, that are not unique to China. They are, for example, common in Taiwan and even in Korea.

Dr Fraser: Another issue I have found in China, with the development of the deceased donation model in some provinces, is they are looking at the family of the deceased having some say in where those organs are allocated, as well, which would be very alien to what we would do here in Australia. At least it is a step in the right direction towards moving towards an ethical deceased-donation model.

Prof. O'Connell: I will reiterate. I have been going to China on multiple occasions since 2000, in particular regarding an issue in 2005 and particularly in my capacity when I was president of The Transplantation Society. We have gone from a situation in China where organs from executed prisoners were being sold to foreigners—especially to the Middle East, and there were large cohorts from the Middle East going to particular hospitals in China for transplantation—to an evolution through a series of steps. You can see that this was not just overnight that they announced this and it all changed. This is an evolution of a series of steps over the last seven years where they have largely restricted it to a trickle of foreigners buying organs. The process is transitioning to providing transplantation to Chinese citizens, as they define it, and moving away from organs from executed prisoners to deceased donation.

The two things that I observed firsthand is what they called COTRS, which is the registry. They are trying to make a system where all donated organs go through a central system and all organs allocated go through this system. In other words, they have a system that is considered the legal system, that they can audit; and transplants that occur outside that system are therefore dealt with with suspicion, and therefore they are at risk of being investigated by the Chinese authority. They are trying to institute that system. I would not say that is fully instituted, but that is their aim.

Also, there is no doubt that many of the hospitals have built up these organ donor networks and are using deceased organ donation. From the hospitals that I visited and the people I have spoken to in several cities, it is clear that they are doing deceased donation, albeit with issues that we would say would be inappropriate in Australia and, I think, from a global ethical perspective are not appropriate. But, in the context of where they have come from, there has been a marked switch. I might add that there was a lot of entrenched interest in China in keeping this going, and the people I know involved in this withstood a lot of pressure, including summary arrest for periods of time, to try and get them to back off. But through a unique opportunity—and because of their contacts with senior leadership within China and this idea of trying to get rid of corruption, and that this was something that was manageable—I think they have made remarkable progress, but it is not perfect.

On the issue of the organs of prisoners of conscience, I have heard the allegations. I cannot say I am an expert in this, but I have seen no evidence of that. I have spoken with the Chinese correspondent for The Washington Post. He has investigated those claims; he can find no evidence of that. I think Harry Wu, who is now deceased but who was himself under arrest in China for 15 years because of his religious convictions, set up a human rights organisation in California. He wrote to the US Senate and said his organisation could find no evidence of that. So we have heard the allegation, and it is an extremely serious allegation. We have not come out and said it has not happened, but we have not seen any evidence that it has either.

Dr Fraser: I also interviewed recently a number of recipients, the patients who receive the organs, in several cities in China—in Wuhan, Guangzhou and Shenyang—and they reiterated to me the fact that it is now moving to that deceased donation model, and that is the patients who are telling me. So we are getting that information both from the doctors and from the patients, the people who are actually receiving the organs, and that provides a very rich area of data that we can capture.

CHAIR: I move to any potential further response in Australia. In New South Wales, one of the members of the legislative council has introduced a bill to increase penalties for commercial organ trading and create offences relating to the non-consensual removal of organs and tissue, and put reporting requirements on health practitioners. Are there any views amongst the panel as to the appropriateness of a legislative response?

Prof. Chapman: In 2007-08, parliament altered the legislation on domestic commercial transplantation, and that change gave us a great deal of strength in the clinical environment. It acted as a deterrent to individuals trying to bring a potential donor over to this country for an illicit transplant but also for a covert illicit transplant—in other words, family members or individuals that families knew from overseas coming over here to donate to a transplant and to receive money in return. I have certainly found that very useful, and it has deterred a number of patients from taking actions which would be illegal. So I think our local law is strong and useful and it has acted as a significant deterrent.

The problem with extraterritorial legislation as proposed is that it is very hard to separate the, as I said, one-third to a half legitimate from the claimed, but probably not, legitimate. Certainly at a medical level the idea that we would be able to report definitively on an individual who had received a commercial transplant overseas is wrong. We are not investigative, we do not have investigative powers, and there is no way that you can tell the origin of the donor as being related or unrelated unless you are able to investigate the actual donor and the hospital where it occurred. If there were to be legislation it would never be implementable. That has always been the concern I have.

Dr Fraser: The key is patient education. Patient education is the best way to deter organ tourism. The success rate of these illicit transplants is very low. The transplant professionals here do an excellent job in educating patients on the risks to themselves. It is not just a matter of ethical behaviour on the part of the recipient; it is the recipients themselves, who are taking huge risks by doing that. The likely outcome of success is a fraction of what would happen if that transplant had taken place in Australia.

I also think that if patients are absolutely determined to buy overseas they are going to do it regardless of any legal sanctions that are there. As Jeremy said, when patients come back they will simply lie. They will just provide a story that the organ was donated by their cousin, or something like that. Therefore it is very unlikely that you would net any convictions. Remember, these people who are coming back are very sick people. After a transplant the patient requires very intense follow-up treatment for several months, so, even if a conviction could be made, there would be huge logistical issues of incarceration or whatever the penalty was going to be. Ultimately, many doctors are going to be very reluctant to report on those behaviours of their patients, so there would be very irregular amounts of data coming from different transplant centres on that. I agree with Jeremy; I really do not think that is a feasible option. It would only have a token effect. It would not actually net any reduction, I would not think.

Dr Martin: I have a couple of comments on this. I agree that we have got very strong legislation within Australia, and I think that that is quite satisfactory. I think there certainly would be a risk if we were to apply extraterritorial jurisdiction. Arguably, it has some symbolic value but then, as we have seen with the extraterritorial jurisdiction for commercial surrogacy, when you do not see prosecutions it can actually undermine respect for the domestic jurisdiction of that law. I think, however, it may be worth looking at legislative options that could help to strengthen the messages about how seriously Australia takes this issue, particularly in the region. That is where something like the Council of Europe convention against organ trafficking may be valuable to explore.

With regard to the other point that you mentioned, about reporting, this is something that the Declaration of Istanbul Custodian Group has been working on for the last couple of years, looking at the potential ethical responsibilities of health professionals to report patients, not for the purpose of facilitating prosecution, because there are a lot of potential problems associated with that and it is perhaps not going to be the most valuable strategy, but so that we can be informed. If there were legislative reform that would not mandate—certainly not initially—but encourage and support reporting of cases of patients who have travelled abroad, perhaps finding out more information about those cases in a manner that would protect patients from prosecution, that potentially could be very valuable in collecting data, getting a better idea and monitoring Australians going abroad. That is something that is being looked at, certainly by the Council of Europe, and it is being explored in other countries. It is something that I think will require more ethical work and policy, perhaps, rather than legislative work.

CHAIR: How far is that advanced in the Council of Europe?

Dr Martin: The Council of Europe Convention includes language that says there is a requirement for signatories to collect information. The specifics of reporting, I believe, was one of the subjects of a workshop held in March. There is a group of people working in collaboration with colleagues from the DICG to look at how that could be implemented. That will probably differ according to the different health care systems and to the legislation governing organ trading. Certainly, there are a lot of concerns in particular countries about how it could be implemented. But I think that, as professionals within Australia, we could already be looking at potentially a voluntary reporting system. Obviously, we need to have those conversations with government about how the data would be collected and how it might be used.

CHAIR: Could that potentially lead to some sort of international register?

Dr Martin: That is ultimately the goal amongst the Declaration of Istanbul Custodian Group, and the World Health Organization is certainly also keen to have a global registry of data that would help us to evaluate what is going on, because we really have a lot of anecdotal reports. Some studies are conducted in particular countries, but we do not have any routine, systematic data collection going on there anywhere. So, we do have—

Prof. O'Connell: Other than Australia.

Dr Martin: Apart from Australia. We are relatively advanced in Australia, but still not as complete as I would suggest we could potentially be.

Prof. O'Connell: To cover a few things, I think the objective is twofold. One is to prevent Australians being involved in any way in organ trafficking, as best we can.

CHAIR: If I could interrupt, there is a division in the House, which means we have to leave. I have asked most of the questions I wanted to, but I will leave it with the secretariat—if there are any matters they need to follow up, rather than detaining you, not knowing when we will be back from the House.

Prof. O'Connell: The important issue that has not been dealt with in the Australian response is one of not putting patients in moral hazard. A lot of countries where this is widespread practice, in terms of people going for transplants, they do not have a deceased organ program. So you are saying to the patient, 'You have a condition that is going to kill you. We have a treatment that exists but you cannot have it.' That puts them in a moral dilemma. In Australia, we have the organ donor authority, which has doubled organ donation rates. That has taken the burden off patients thinking that they need to go elsewhere, because they know that when they go to Pakistan, India or Sri Lanka they are not going to get the same treatment they would get here. If they know they can get a transplant here they will not go. So I think the biggest response the Australian government has made to help is the institution of the AOTA.

Secretary: Sorry to interrupt. Unfortunately, all the members have had to go to the House for a division. I cannot thank you enough for giving us this information today and for talking to our members. Unfortunately, budget day is always a little bit problematic. One of the members asked me to ask what the likelihood was of countries signing up to that agreement.

Prof. O'Connell: There are many countries signed up to the Council of Europe Convention. We have asked the Australian government to consider signing that. At the current point, the answer has been that it is a European convention. But it is not. It is a Council of Europe convention and it is intended to be a global instrument.

Secretary: Would it be possible to send me information on that?

Dr Martin: I will send you a link to that.

Secretary: Thank you. I may well be in touch with a few additional questions.

Subcommittee adjourned at 13:14