Thursday, January 17, 2013

'Presumed Consent' in Wales is a terrible mistake

Regular visitors will know of my opposition to the Welsh Gov't's proposals to change the organ donation system in Wales to one based on 'presumed consent'. Although there is an ethical dimension to this issue, my opposition is based entirely on efficacy. 'Presumed consent' will not increase the number of organs available for donation. There is not a shred of evidence to support the Welsh Gov't's assertion that it will.

Today I received a copy of a letter sent to the Assembly's Health Committee by the UK's foremost expert on this issue, Prof John Fabre, Professor Emeritus, Kings College London who points out that the Welsh Gov't's consultation process was fundamentally flawed and deeply misleading. Here's the first paragraph, which you should read if you care about the importance of organ donation;

Re: Explanatory Memorandum for the Human Transplantation (Wales) Bill.

I would like to bring to your attention a crucially important factual error in the memorandum, as well as other important points in the Memorandum that the Welsh Government needs to address.

1. The factual error occurs in Clause 102, in the section entitled “Evidence Base to Establish Impact of Proposed Legislation”. It states “For example, an opt-out system is operated in Spain and it has the highest donation rate in the world with approximately 32 deceased donors per million of population”. Spain does not operate a presumed consent system. The Director of the Spanish Organ Donation Organisation (Organizacion Nacional de Trasplantes <>), Dr Rafael Matesanz, is on the public record several times making this point, most recently in an article published in the British Medical Journal on the 30th October 2010 (volume 341, pages 922-924). The authors of this article, listed on the last page, are myself, Paul Murphy (an intensive care physician), and Rafael Matesanz. I attach a copy of this article. If you read the middle column of the first page you will see “Crucially, Spain does not have an opt-out register for those who do not wish to become organ donors. Not a penny is spent on recording objections to organ donation by Spanish citizens, nor on public awareness of the 1979 legislation. Clearly, the presumed consent law in Spain is dormant, and it pre-dates key policy changes made in 1989. In these circumstances, Spain’s outstanding deceased organ donor rate cannot reasonably be attributed to its presumed consent laws”.

If you have any doubt on this point, you should contact Dr Matesanz on 00 34 902 300 224 or Linking this factual error, about Spain and presumed consent, with the true fact that Spain has the best deceased donation rate in the world, in a section on the evidence base for the proposed legislation, is clearly and quite outrageously misleading. Any expert adviser will know that Spain does not operate a presumed consent system.

The Welsh Government must issue to Assembly Members and the Public a corrective statement along the lines of “The Welsh Government regrets that the statement in Clause 102 of the Explanatory Memorandum for the Human Transplantation (Wales) Bill is incorrect. Spain does not operate a presumed consent system, as stated in Clause 102, although it does have the highest rate of deceased organ donation in the world. Spain’s 1979 presumed consent legislation predates the key policy changes made in 1989. Spain does not have, and never has had, an opt-out register or other means of registering objections to organ donation by Spanish citizens. Spain does not spend any resources whatsoever to publicise the 1979 legislation”. It would be a scandal if the Bill were passed by Assembly Members given a manifestly misleading statement by the Government of Wales.

If the Welsh Government believes that the mere presence of the legislation in Spain somehow subliminally influences donation, then it should emulate Spain and pass the legislation but without a donor register and without spending resources on publicity.

There's a lot more as well. This is all deeply worrying.


John Jones said...

Its good that you have exposed this any government if its worth anything has to have integrity and serve its citizens.

For me our bodies do not belong to the state.Freewill is given us to as a gift.
I was not made in the image of the state.
Seems more to speak of a communist dictator society and that has always led to horrendous abuse of its citizens.
Individual's must be able to make the choice for themselves.

Glyn Davies said...

John - While I accept and agree with the point you make - which has also been very well made by the Archbishop of Wales, my objection is based on the fact that 'presumed consent' will not deliver any more organs for donation. Its a 'political' initiative rather than a 'health' initiative. It is very wrong.

John Jones said...

Dear Glyn, I read what you wrote and understand you come from a different standpoint but the outcome is very much the same.
How would the recipient feel if the donor or family had not given their consent and it was carried out according to the state? maybe that is hypothetical anyway!

Good you are sticking with it!

By the way thank you for the wind posts appreciate that, knowing you feel so opposed to it!

Glyn Davies said...

John - Its not that I disagree with your point at all. Its just that I believe basing opposition on efficacy is likliest to have purchase. I also allow my blog posts to accommodate all opinions (unless profanely or offensively expressed). I should also add that my opposition to onshore wind farms in mid Wales is based on the scale of what is proposed. I was not an opponent until TAN8 identified mid Wales as the location for such massively intrusive development.