Transcript of Dispatches interview with Vivienne Nathansan, spokesperson for the BMA's Ethics Committee

Is there a crisis?

There's a crisis and, at least in part, it's because we don't have a method to deal with these rising waiting lists and all we can do is predict that they will continue to rise beyond our ability to produce organs for people who desperately need them.

What about the ethical minefield of new ways to obtain organs for transplant?

It's not a crisis in terms of the ethical issues, but it is certainly a heated debate and a very important one. The difficulty with that debate is to try to separate out the individual patient, who the doctor may have seen in the surgery the day before who is desperately needing this transplant, and the actual issues -- which are about protecting the rights of all individuals, and of making sure that we don't undermine the values that we apply to health and to health care.

Is the donor in safe hands within the medical profession in terms of them making the best decision about what should or should not happen?

Well, because we separate the decision about whether someone is suitable as a donor from the needs of the individual patient who might receive that organ, we think we have the best system to protect people from pressure being brought to bear emotionally and morally. Indeed, doctors or others could feel pressure to accede to someone's wishes if it's not in their best interests. The issue about live donors is an issue that's a very important one because the information is now changing, the attitudes of doctors are beginning to change as a result of developments in medical technology.

Can you expand on the way that it's changing?

There's work beginning to be published now looking at the results of live unrelated donors giving particularly kidneys. The fact seems to be that there are better survival rates amongst the recipients of those than from cadaveric kidneys. When you associate that with the fact that, for the donor, the outcome seems to also be very good (there does not seem to be a high risk of renal failure or of complications from the surgery) then we're talking about good outcomes for recipients and good outcomes for donors. If that is significantly better than cadaveric donors the impetus will be to produce more live donors.

This is a sea change in attitude and policy and an exciting prospect?

It's a very exciting prospect because it does mean that there is the possibility (if we can persuade people to give the altruistic gift) to actually improve the numbers of donor organs significantly. We're not at the same state yet with donations of other organs, or parts of other organs, but certainly with kidneys (which make up the majority of the waiting lists) we have a real opportunity and a real excitement about the future. However, we do need to have the public education campaign as well as the education campaign of doctors, based upon this kind of information.

Are we talking about stranger donors?

We can be talking about stranger donors or we can be talking about people who know a recipient. The difficulty with people who know a recipient is that there are concerns about pressures being brought to bear upon people to give an organ when in fact they themselves don't want to. They can be pressured into it, so any system we develop to obtain organs has to protect the donor from undue coercion. I say undue because I think we have to accept that anyone who has seen someone suffering while waiting for an organ is morally and emotionally coerced by their own emotional reaction to seeing someone suffering.

So the pressure you are most concerned about is that of a family member who feels obliged?

That is a problem because we do need to make sure that the donor is comfortable with what they're doing. They may be concerned that they are comfortable and can accept the risks, but there are other potential pressures. We have to remember that a trade in organs does exist in some countries and there would be even more concern over commercial pressures which might persuade people who are in financially disastrous situations to donate.

Is there a possibility of a system similar to blood donation?

It is at least in theory possible that we will start to altruistically give kidneys in the same way that we give blood. However, it's important to recognise that the schemes to get more people prepared to give marrow transplants, which are even lower risk and less difficult in many ways than giving a kidney, have been not wholly successful. We have not recruited the many millions that are really needed to give all children, for example, with leukaemia who need a marrow transplant, the opportunity of that transplant.

How would you like to see public awareness raised?

I think the first thing we have to do is to make sure that there is a debate amongst doctors -- particularly when we talk about live donors of solid organs such as kidneys as there is still some confusion and concern over the quality of the medical evidence about this improved outcome. Once that is satisfactorily resolved we need to take that to the public to make people understand the nature of the surgery, the safety of it and the benefits that accrue to others. We also need to make sure that we have a system in place that can reassure the donor that if they are ever in need they will also have a good opportunity to be looked after well because that is often people's major concern.

Can you talk about living donors for lung transplants and cases like that of Ron Johnson?

I think we have to recognise first of all that all medical and surgical techniques start off as a research technique. They are, if you like, experimental and clearly the people taking part in those techniques, as subjects, need to know that. When you're talking about a patient for whom there is no other treatment, you have to be very careful about giving that information. We also recognise that people will seize on opportunities to live or to improve their health which may not be available in any other sense.

The difficulty is when you put in the healthy individual, and ask them to expose themselves to risk. This is why live donation is very different from cadaveric heart donation because in cadaveric heart donation this was someone who was dead, giving someone who was dying an opportunity for life. The key point has to be that they enter into it freely, that their consent is properly informed, that they understand the risks and are making as free a decision as it's possible for any of us to make. The second issue is about whether it's acceptable for people to take these risks. Do you know with reasonable certainty that you have a chance of it being successful? Has all the animal work been done? Or the computer modelling? Or all the other things that that give you some indication of the likelihood of this being acceptable.

Ron Johnson wouldn't have been accepted as a living donor in the UK, yet in America he was. Is there disagreement within the profession about that?

Because this is still a very early development of the technique, I think we have to recognise that different groups are using slightly different criteria to select both patients and indeed donors. That's inevitable. Part of the development of any medical technique is the publication of their results with those criteria and the treatment categories put in so that we can start to assess what is the best. It's only when you then carefully select and use everyone's best results that you start to come up with a consistent standard which can apply world-wide and which we know will deliver -- hopefully repeatably -- the best results everywhere.

Ron Johnson said that he would do it again, in principle. He didn't feel that what he had done was futile because the girl had died. He also said that if he did it again, the next time he would not want to have met the family and the recipient.

You know, the experience from cadaveric donation is very interesting in that the majority of cases have no link between recipients and donors. What the UK transplant authorities organise is that if the recipients of organs wish to write to the family of the donor, then they will exchange those letters. The letters are anonymous but at least the donor's family knows that people have received, and are grateful for, that gift, and that seems to be a very positive thing. It reinforces the value of the altruistic gift without involving them in someone else's life and exposing them potentially to the grief and sadness if things don't go well. I think that that is a very valuable lesson to learn.

The surgeon John Dark was concerned about the 30 per cent of people who don't agree to organ donation after death. How do we change people's attitude about the way to behave at that time?

We have to start by saying that we should all be discussing with our families the way we personally feel about organ transplants. This means our families are aware that we would wish to be donors if we were injured lethally, in say a car accident, or had the kind of medical condition which led to us being potentially a suitable donor. That's an important point. At least if we've discussed it, it doesn't come as a completely new subject to family members when asked to make that decision.

The alternative route, which we also support, is to consider the issue of opting out rather than opting in, so that there is an assumption that any of us who die in the right kind of medical circumstances would be willing to have our organs used for donation. If we have to opt out and put our name on a particular register saying that our organs cannot be used, that might free up more organs. Certainly that's been the effect of that legislation in some countries. To do that, of course, we still have an absolute obligation to make sure that the public would support that, because nothing that we do in this area must upset individuals. If we do, then we risk undermining people's willingness to take part in a system that can only work if we are all prepared to make altruistic gifts.

How is the BMA going to proceed?

Well the government has said they're not prepared at the moment to change the law. Clearly we think the way to do this is to start off by getting the public to support the move, along with many other organisations. We are talking about the issues of shortage of organs, we're talking about the benefits that can come from a presumed consentor and opt out system. We're trying to talk to those groups which represent the public generally, and not just the patients awaiting transplant, although clearly they also have an important role to try to get the public to support this concept. If we can go with representatives of the public to say there is now an overwhelming public support for this then I think legislative time could be found.

Are you doing enough?

We're working hard at it and using every opportunity, but we don't expect it to be a short term campaign. I think that's very important. We have to have our mind to the long view on this because if we expected to be able to achieve this within a matter of months then we'd be disappointed and I think demotivated. It's much more important to take a long view and to say this is our eventual aim, and to work towards that.

If people were more aware of the full consequences of renal failure might they think more about what they could do?

Yes, people who have kidney failure and who are very ill are put on dialysis and are dramatically much better. But they are not well, and their life is not full in the sense that they are very restricted by the nature of their illness and by the difficulties of the dialysis itself. It is a physically demanding and difficult process, so the option of a transplant is one that almost every patient on dialysis seizes as soon as it's available. You are absolutely right that we have to present the truth about this to individuals, not to undermine the success of dialysis, but to say that really it is the least good option if we put it against a transplant.

Can you stress the newness of the information?

Yes, there's very little in the published domain at the moment about the comparative outcomes of live donors and cadaveric donors and it's certainly not something that has been seen by every doctor. It may well be known by some doctors in specialist practices, but not by all and it's certainly something that needs wider debate so that doctors can take this forward can discuss this with patients.

Ron Johnson was allowed to donate in Missouri but he wouldn't have been allowed to donate over here in Newcastle. Does that mean that the Americans are ahead of us on this?

It depends on the reasons why he wouldn't have been allowed in Newcastle but was in Missouri. There are always differences, particularly when there are new and experimental techniques, in the rules that apply for recruiting people. Normally that would apply to the patient but it will also apply to donors. Part of that is to use different, selection criteria and to analyse those carefully to work out what is actually going to be the best. When techniques become well established you find remarkably little difference between different centres because effectively there is a world consensus. You would find that, for example, if you looked at recruitment of patients onto lists for heart transplant, there is a remarkable similarity world-wide.

How are you able to work on your own members and the general public to persuade all of them that they must listen to this information?

Well first of all we have to make sure that every bit of information we produce is scientifically verifiable, because it's when people can trust that that they can start to look at the content of what we're saying or suggesting. It's trying to present that information to people in a way which means that they can absorb very complex information, perhaps only available to a limited research readership before, and see it's implications. For doctors, the issues of transplant are of interest to all of us because every doctor sees patients who need a transplant at some stage in his or her career. For many doctors, they will see large numbers of such patients. GPs have patients on the lists on renal dialysis or dialysis patients are waiting for other forms of transplant, and families of patients who've been donors. So it's of interest to all doctors, it's a matter which they want to be able to advise their patients, so it's actually open ears that we're talking to.

What can people do?

Anyone who wants to do something -- the first thing they should do is talk to their family and sign the donor card, so that in the current system of donation if unfortunately they die, their organs can be used. The second thing they should do is to watch for the debate that's going to happen on alternative systems of permission to take cadaveric organs and what I think will be an evolving debate on the recruitment of live donors. I think as well that they should be thinking of going to give blood and they should be asking as well about getting onto the marrow list so that if there are people awaiting marrow transplant, they may be suitable donors. Those are things they can do today while looking out for the debate and the opportunities to be added to the live organ donor lists for other organs in the near future.

Is being a living donor something which a GP would discuss with someone at the moment?

It's difficult at the moment for GPs to discuss live organ donation because there are relatively few schemes established. It is better for people who are thinking of that to make contact with the UK transplant authorities to get the names of the centres who are interested in recruiting live donors at present, and they will be able to give them information.

Is the BMA actively looking at the current system for collection of information?

We think that the information that's available is pretty good. It's consistent and it's readily available but we are always open to people saying it can be improved.

What about 'growing' organs for transplant?

I think it's unlikely that we will, in the near future, be able to grow organs. This is because organs are organised collections of tissue. However, I think that the technology that's coming out of genetic research will allow us in the relatively near future to grow groups of cells which may be usable in transplant technology. Now, for example, we may be able to produce the cells that produce insulin and transplant those into diabetics, and other tissues of that sort, but it's unlikely that we'll be able to replace the kidney or the liver itself. It may be that we'll be able to produce the kinds of heart muscle cells that allow us to do more to repair hearts rather than replace them but that's very much in the quite long distant future.

So there's no room for complacency?

No, we have no room for complacency because all we can predict is that with our increasing success in treating serious illness and in reducing the numbers of people dying in road accidents and so on we will have a growing number of people on organ transplant lists world-wide. Even if we are successful in recruiting live donors for kidneys and parts of liver and lungs, we will still have the heart recipients who clearly can only be dealt with by the cadaveric donors. We do need, above all else, to maximise the numbers of cadaveric donors that are made available.

Do you expect the government report to have anything radical to say?

We would expect that the government will be evolutionary rather than revolutionary because what we mustn't do is to undermine public trust. If there is ever a breakdown in the trust of the public in the safety of the organ transplantation procedures, in protecting the rights of donors and recipients, then we will find that there is a calamitous fall off in the number of donors. We will see still worsening levels of people waiting and dying on the waiting list for organ donation.

Is it possible to transplant pig organs or tissue?

There's a great deal of research going on in the possibilities of using animals to produce organs which would be transplanted into humans. Part of this comes from the success in reducing the level of rejection of non-perfect matches now. It's pigs that are being used predominantly, a great deal of that being to do with the relative similarity in the size and shape of pig kidneys to human kidneys. None of this has actually gone ahead yet. There are concerns about the potential spread of viruses that we don't see in humans from other animals, particularly a retrovirus from the pig, a retrovirus being related in that sense to the same family of viruses as HIV. We do need to be very cautious about this and it is absolutely uncertain whether animal to human transplants will ever become an established part of medical technology. If they do, it is likely to be an extremely slow and careful process of assessment of individuals, and of the technology, to ensure that it's safe and that it doesn't put the recipients at very great risk.

And it brings it's own set of ethical dilemmas . . .

Absolutely. There are major ethical dilemmas about this because part of the debate has to be about what are our rights in terms of using animals as some form of technology. How do we square that with modern attitudes to animals? How do we make sure that we're not being inhumane to those animals? There are issues around animal safety and respect for animal life as well as around human safety -- animal safety also because when one starts to look at viruses crossing between one species and another it's not necessarily a one way trade. And we have to look at the environmental and ecological consequences as well.

As well as the fact that many people feel it's a line too far?

There are many people who feel that it's a line too far. There are also some people who find that some of the animals being suggested, particularly pigs, are unacceptable for religious reasons. There are also issues around safety and around the time scale of this that mean that we cannot look with any complacency on this as a way out of the current problem. It is not realistically going to solve the problems for people who will die while on current waiting lists.

What do you, as the medical profession, have to say to Sarah, as the patient?

Well, to a young patient on dialysis who's really suffering, who's seeing the quality of their life getting worse, and who's waiting and waiting for a transplant, I'd let her know that she is not someone we're forgetting. We are doing everything we can to maximise the numbers of donors who come forward. We're looking at all the exciting new possibilities and saying yes, let's adopt those, provided that they're safe and provided they offer real hope. We're trying to get rid of this awful wastage of organs when a life has already been lost, we're doing everything we can. I think an important thing that patients themselves can do is to go and talk to groups at schools and in public meetings. Explain just how desperate life is when you're waiting with great hope for a transplant, but not with much expectation in view of the current waiting lists.

Can you convince your members to change their attitudes?

Well, we've had a public meeting every year which sets our policy. We put to that meeting last year the concept of changing from the current opt in system of donation to an opt out system. It went against the expectation because this is a radical change and it was overwhelmingly passed. We have enormous support. I think that is a very important message. Doctors around the country have all seen the fact that the current voluntary system is not working sufficiently well and they are committed to doing whatever they can to deliver more organs for those people who need them.

Have you raised the question of living donors at an annual meeting yet?

At the annual meeting of the BMA we haven't yet raised the issue of living donors, but I have no doubt that will be a matter that'll be a subject for debate at an annual meeting, particularly because of the work we're doing around the information campaign on donation. As we spread the information about living donors it is likely to excite interest that will lead to a debate.

And one day it might be possible to offer a kidney as easily as it is today to offer blood?

In the future it may well be as easy to offer any organ, particularly paired organs or tissues, for transplantation as it is to offer blood. Hopefully we'll use the technology and IT to make sure that we can register information about things such as tissue type for marrow transplantation as well.