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The heart of the matter

January 1, 2011

The UK Government has announced that, from next July, applicants for a new driving license will have to answer a compulsory question on whether they wish to donate their organs for transplant after their death. This, it is hoped, will greatly increase the number of citizens on the organ donor register – by nudging those who are willing to donate, but who often don’t get around to registering. This method of recruitment is known as “prompted choice”.

The news has been widely welcomed by the medical establishment and the media. In fact, according to the BMA, this should be a first step towards the far-more-desirable method of “presumed consent”, where a citizen is presumed to allow their body to be used for medical transplantation unless there is an explicit statement of refusal.

Organ donation is a subject that fosters very strong emotions. So it’s with a heavy heart that I declare my strong objection to this development. I find the BMA position on presumed consent presumptuous and unsettling, and this latest scheme unnecessarily coercive in tone. It is not the place of the state – however well-intentioned – to force citizens to answer questions regarding the custody of their own bodies, dead or alive. And it is not the place of medical science to ‘presume’ anything regarding the bodies of the citizens it serves. Only to ask. Very, very nicely.

Perhaps there aren’t many people like me who see a danger behind the good intentions of this announcement. Transplantation itself is such a good thing – and something I would be grateful to give and receive if needed! So why would I take this perverse position?

Professor Dick van Veltzen

Professor Dick van Veltzen

Maybe it’s because, some years back, a pathologist called Dick van Velzen stole my little brother-in-law’s heart from out of his newly-dead body without telling my family. He kept David’s heart in a private collection –  along with the body parts of hundreds of other children – because he considered it to be an interesting research specimen (David had Down’s Syndrome). He wanted it, so he took it. Medical interest presumed its own consent. The private pain that this violation caused my family was immense. The discovery of David’s heart, and many similar thefts by van Velzen, caused a national scandal which led to the Human Tissue Act of 2004 – enshrining donor consent in the very heart of law. But I believe that these latest subtle changes to donor questioning dilute the power of this consent. And I think this is a bad thing for all of us.

I will leave the personal account of David and the events surrounding the Alder Hey organ scandal to my wife Heidi, who wrote a UK newspaper article about her brother a few years ago. She articulates this far better than I could. For the purposes of this post, I think it’s better to focus on the wider implications that I feel can get lost in the high emotion.

Firstly, I believe that government changes to organ consent forms in order to introduce a compulsory component is ethically problematic – in that it imposes an unacceptable element of coercion over a citizen’s personal choice to donate. I don’t believe the state has a right to do this – however well-intentioned it may be. A democratic society is a constant balancing act between the power of the state and the rights of the individual. For me there can be no clearer mark of the bottom-line rights of an individual than the full custody of their own body – dead or alive. Once this line is crossed, we risk exposing ourselves to far less-palatable state controls over ourselves and our bodies.

Secondly, and related to the above, I feel that this issue is an example of a government legislating for convenience, rather than in the long-term interests of the people. Basically, having failed in trying to persuade us to donate, it’s now going to twist our arm a little in order to make us do what it wants. Although I have absolutely no doubt about the good intentions of our policy makers, I believe that the effects of this move are damaging. This issue is about a tragic disparity between a desired level of donor registration, and the current registration figures. But this disparity in my view represents a failure of communication, and not some fault of the public which must be legislated against. Put bluntly, the medical community has not got its message across. It has tried – but clearly failed –  to get adequate public backing for organ registration. So whose fault is this? Is it simply the fault of an ignorant public – selfishly or stupidly refusing to listen and sign up? Must the public now, like some dumb animal, be pushed by the state into doing its duty? Or does this remedial government action merely paper over the real cracks in the donor registration story – namely the failure of medical science to make its democratic case. I believe so – and as a student science communicator, I believe it is people like myself who should ultimately bear the burden of making the case for organ donation – not Parliament. In my years as an actor I have met many skilled members of the advertising profession. I cannot think of any who would not relish an opportunity to promote such a good cause – and who would not be able to build a powerful campaign around such a medical issue –  full of creative and convincing argument. That’s what politics does to make its case. That’s what the media does. That’s what business does. That’s what every constituency in a free society does. It seeks to persuade the citizen to exercise free will in their favour. It is these communication skills that are needed to convince the public to exercise their free choice in organ donation. Government coercion is a dangerous and lazy substitute for an effective, well communicated, well-funded democratic argument.

But is all this not simply liberal scare-mongering? Bleating on about the ‘thin end of the wedge’ while innocent organ recipients die? With utter respect and sympathy for all those waiting in real anxiety for organ treatment, I believe passionately that it is not. Dick van Veltzen was a stark example of the damage that can be done by a rapacious medical expediency in the use of human tissue. And this creeping coercion in donor consent does nothing to help protect us against such abuses. I have no doubt that Professor van Veltzen would justify his actions as as having been in the wider public good. Some might agree with him – after all, his research may yet have yielded medical breakthroughs that saved lives, if only we weren’t so ‘irrational’ and ‘sentimental’ about the body parts of our dead children. But – as the Alder Hey inquiry concluded – that was not his call to make. And I don’t believe it is the right of my government to make any such call now – even as tentative as these latest moves are. Organ donation is a question of individual choice – freely given, without any form of coercion. That is the bottom line. If the donation figures are not what we want them to be, then we must all work harder to make our democratic case and win more widespread informed consent. This will get my full support. But if the state starts to push me into accepting an outcome for my body that it sees as expedient, then I am forced to oppose it.

Jamie and Gladys Scott

Jamie and Gladys Scott

Finally, another news story gives a salutary illustration of the consequences of state control over organ donation. In the State of Mississippi, USA, Governor Haley Barbour has just paroled two armed robbers – sisters Jamie and Gladys Scott – on the specific condition that one sister donates her kidney to the other. This has caused an ethical storm in the United States, as this is basically buying one’s freedom by the forced donation of a living organ. America is a highly-evolved democracy. The well-intentioned pragmatism of the governor is clear. And after all, one patient is sure to benefit, while both live, and go free. But can it be right for the state to exercise such draconian controls over the body parts of its citizens, and then use them as legal bargaining tools? Is this really where we want issues of donation to lead us?

I have been very concerned by the hostility expressed by some members of the public towards those who are reluctant to consent to donation for whatever reason – as can be seen on this blog. Whatever an individual’s personal experiences, it is surely not right for one citizen to dictate the donation decisions of another. The suggestion that those who refuse organ donation on personal or religious grounds should in some way be excluded from receiving future medical treatment is a monstrous perversion of the public good, and raises a host of other ethical issues. Shall we only give organs to those who pay sufficient tax funds into the NHS? Refuse organs for those who are obese? Or smoke? Or drink too much? Or have unsuitable religious beliefs? I for one do not want to live in this kind of a society – whether or not my organs are donated.

In the honest desire to save life, we must be careful not to lose our essential humanity. Mass donation is the most desirable of consequences. But let it remain a gift freely given – not a coercive force that takes our heart away.

2 Comments leave one →
  1. January 16, 2011 4:25 pm

    Very passionately argued, Steve. It is a very tricky issue; I don’t know what the form looks like at the moment where the option is available, but organ donation regulations in Australia have gone through several iterations over my lifetime and the manner in which the option is presented is undoubtedly important.

    While I haven’t seen data, I would suspect that under the current system, the number of people registered as donors is smaller than the number of people who, in random polling, support the idea. Such disconnect in attitude and behaviour is not unique (in Australia, water and energy saving schemes which boasted free new light globes installed and other such free stuff were crippled by slow uptake). It comes down, like you say, to communication, but also to where and when the option is presented.

    If the average person has to be proactive to get on the register, then there’s an immediate barrier to uptake which has nothing to do with communication or their opinion, which is that it places a demand on their time. Incorporating the decision into a different, compulsory process removes the barrier, which may lead to closer matching between people’s attitude and donation status.

    It would be interesting to see hard data on this! A thesis topic, perhaps!

    • January 16, 2011 5:46 pm

      Hi Dave,

      Yes, I think you isolate the crux of the matter perfectly as that gap between what people say they want to do, and what they proactively sign up to. I’m absolutely in favour of securing the will of the donating individual while they live, as opposed to relying on the retrospective emotions and changed minds of the relatives after a person has died. If someone says they consent then their will should not be countermanded after their death. Such a donor statement should stand like a legal Will.

      But there is an effect well known to opinion pollsters in which a person can profess a commitment publicly, and yet privately be more reluctant. And when push comes to shove – for instance in the privacy of a voting booth – they can change their minds. Anyone who follows Facebook will know that it is easy – and very popular – to “like” a site which advocates a certain stance, but a lot more challenging to persuade people to actually go out and march to support that stance. I believe that this is not simply a matter of inertia, but a very necessary focusing of the mind which must happen when any individual is required to turn “likes” into actions in this world. For me, an opt out subtly coerces by removing this necessary pause for thought.

      I believe there can be few more proactive acts than the donation of one’s organs. Therefore it is appropriate that a person should demonstrate a proactive support by opting in, rather than being placed on a list merely by some default “like”. We have to proactively ‘opt in’ in order to vote. Why should we be forced to ‘opt out’ regarding the more profound issue of the uses of our own body?

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