What's inside that counts

by Alistair Bone
courtesy of the NZ Listner - www.Listener.co.nz

Dr Martin Wilkinson

Organ donors in New Zealand are not allowed to dictate who their body parts should go to, even if that means fewer vital donations. Now a medical academic is arguing that the policy should change.

In 1998, a British man donated his organs on condition that the spare parts would go to a "non-ethnic" person. This had never happened before so, without a protocol to follow, the frontline junior officials involved simply accepted the offer and two kidneys and a liver were duly placed into needy non-ethnics. White people were at the top of the list anyway and the person who received the liver would have died the next day if they hadn't undergone a transplant. Ethical crisis averted - briefly.

Prompted by the incident, the transplant services CEO subsequently issued a memo stating that all organs should be accepted, even with conditions attached. But, when word of the arrangement spread, the British Department of Health launched an investigation. The practice was condemned, the CEO was fired, the transplant service's name was changed and a promise was made never to do it again.

Dr Martin Wilkinson, from the department of community health at the University of Auckland, says that the British made the wrong decision. In a recent paper presented at the university's philosophy department, he argues that it is clearly wrong for people to put racist conditions on the use of their redundant organs, but also wrong for transplant co-ordinators to turn down an offer of organs with conditions attached. Which happens to be the current policy in this country.

Wilkinson says that racist conditions should be accepted if the pool of organs is increased and lives saved at no cost to anyone. It is more problematic if any group becomes worse off. Take, for instance, the situation where conditional allocations of organs are not allowed, resulting in one ethnic group receiving 90 organs and another ethnic group 15. If conditional allocations are then allowed, and the first ethnic group now receives 94 organs while the second still receives 15, this is probably okay. Wilkinson says that conditional allocation becomes more difficult to defend if it turns out that the first group receive 100 organs and the second just 10, even though more lives are saved overall.

Janice Langlands, national donor co-ordinator at the Auckland District Health Board, says the practice is known as "directed donation" and is not allowed to happen in New Zealand. "It is understandable for a mum of a young child to say they want the organs to go to a young person. But we wouldn't allow that. The problem is that once you start that, you get people saying they only want it to go to a Caucasian or a Maori or to someone of a certain religion."

The health board doesn't have a written policy on the matter, but Langlands says that there is a general understanding through Australasia that it will not be allowed. She has been involved in the business for 11 years and says only once has someone tried to insist that their organs be used for a certain type of person - in this case the wish was for a younger recipient. The policy was explained and the donor relented. By good fortune, and perhaps because of the lack of bureaucracy in the process, youngish recipients were found, anyway.

Wilkinson says that the policy jumps the gun. "If it is true that before we know where we are everyone will be doing directed donations and this really screws things up, then maybe it is a bad idea. But we don't know that and this is one of those cases where you are definitely turning down something that could save or improve life - in order to forestall a speculative harm when there is no evidence that it is going to happen."

In New Zealand there are around 300 people waiting for a kidney; last year 39 donors yielded 69 usable kidneys. Because competition for the organ is so fierce, Langlands says that the allocation system is computerised to keep it fair and equitable. The kidney goes to a person with a very good tissue-typing match; if no exceptional match is found, it goes to the person who has been on the waiting list the longest.

For hearts, lungs and livers, the recipient has to be of a compatible blood group, and for hearts and lungs they have to be the right size. In a small country the system for allocating the less urgently needed organs is not as formal. With around 10 people waiting for a heart and only three or four of those compatible with any given heart, doctors know all the candidates and can make a decision based on specific merits.

Langlands says that the pool of donations might increase for a short time if they allowed conditional donations. "But it might upset other people as well," she says. "It is discrimination that we couldn't get involved with."

What if it frees up another organ that could be used on a person discriminated against? "It could, but it just opens up a can of worms."

Wilkinson suggests that a policy of accepting conditional donations could simply be kept from the public at large. "There are lots of things that don't get publicised, like the family veto. Families can veto an individual's decision to donate their organs. You don't have to formally keep it secret, just don't make a song and dance about it. Consider this parallel; English private schools have a fund that they don't shout about. Parents who get made redundant or can no longer afford the fees get offered money out of this fund. They don't make this widely known or people would start defrauding the scheme."

Is secrecy sound practice, especially for a public entity? "It is [philosophically] similar to a government not admitting that they are going to devalue the currency, or refusing to say what is going to be in the Budget, because it just has such bad effects. I doubt that people would find out, and maybe if they did find out, maybe the bad effects wouldn't happen. Maybe they would all just donate unconditionally."

A policy of secrecy could also help alleviate the symbolic support for racism that accepting conditional donations engenders. In his paper Wilkinson says: "Secrecy would not prevent the symbol being a symbol (a road sign is still a road sign, even if you hide it in your garage), but it would prevent the bad effects." Other ways of limiting the symbolic effect could be to publicly deplore the conditional donation, set out the reasons it was accepted and make increased funding available to the group discriminated against. Wilkinson concludes that, compared with saving lives, symbolism is not that important, anyway.

In banning the allocation practice, the British Department of Health panel took a different view. It said it was conscious of the fact that people might die because of its decision and it was a hard judgment to make, but "the panel are, however, convinced that it is the right one, morally as well as legally".

Wilkinson makes it clear that he is not keen on the attitude of many involved in bioethics. "If the racist's offer is rejected and his organs left unused, then in many actual circumstances some will die (or lead worse lives) with no commensurate benefits for anyone else," he writes. "It seems to be relatively uncontroversial in bioethics that the organs should nonetheless be wasted. This is perhaps not surprising. Many official policies in bioethics are, to non-bioethicists, remarkably cavalier about saving lives."

Langlands, however, points to current events as just one example of how things could rapidly become pear-shaped. "Imagine if we had families in the next few weeks who said they only want to donate a kidney if it goes to Jonah Lomu."