Saturday, 12 November 2011

The Welsh Government's white paper on organ donation

Wales currently has high rates of organ donation, but 51
people still died waiting for a transplant in the last year.
(Pic : The Guardian)
It's been a rough week for them, so I think it's time I cut the Welsh Government some slack and focus on one of their boldest (and potentially controversial) moves - probably in the history of devolved government in Wales.

The Welsh Government published a white paper on Tuesday outlining their plans for a new law on organ donation. They are seeking views in a consultation that will end on January 31st 2012.


51 people died waiting for an organ transplant in Wales for 2010/11. Although record numbers of people in Wales donated organs last year (83), the Welsh Government hopes that a presumed consent law would boost organ donation rates by as much as 25% and reduce unnecessary suffering.

In a rare bit of good news in the Western Mail, Wales currently has the highest organ donation rate of the home nations and one of the highest organ donation rates in Europe (behind the likes of Spain). However donation rates for hearts in particular have fallen consistently over the last 20 years.

What's proposed?

A "soft opt out system" – whereby consent for organ donation would be presumed upon death unless the person opted out of the organ donation register when alive.

Doctors would still look at the organ donor register (options listed below) to see if the deceased has wished to donate their organs, and would still seek the family views. The wishes of the deceased would be the overriding consideration. Consulting the family would make the families and medical professionals aware of unregistered objections and possible problems with transplanted organs (i.e lifestyle/behaviour issues).

The law would apply to:
  • Anyone over 18 who lives and dies in Wales.
  • Anyone over 18 who has lived in Wales for a certain length of time (the length of which is to be consulted).

The law would not apply to:
  • Anyone under 18.
  • Anyone over 18 who lives in Wales but dies elsewhere.
  • Anyone over 18 who doesn't have the capacity to understand the donation law or make a decision
  • Tourists and other visitors (anyone who doesn't ordinarily live in Wales).
  • Unidentified bodies

There are four proposed options for the new organ donor register:
  1. Separate registers for objectors and non-objectors
  2. A register only of those who have not objected
  3. A register of only whose who have objected
  4. No register, but an objection listed via the person's GP

A person would be able to opt out: "any and all methods put in place to enable an individual to make a confidential objection to donation in an easy and accessible manner". It would also "enable an individual to opt-out of donating all organs and tissues, or to opt-out of donating some organs or tissues."

Myths and rumours

It's time a few myths and rumours were scotched now. There won't be:

  • State ownership of the body – relatives would still be consulted as currently.
  • Organ harvesting – the transplantation procedures would remain exactly the same, donated organs would go to those who need them not automatically taken from every single dead person in Wales.
  • Sale of organs by the NHS – to suggest such is undeniably crass but I've already heard it/read it. Lesley Griffiths should stamp this ugly one out right now.
  • Donation to science – donated organs/tissues would only be used in transplant not stored for dissection, teaching or research. The dead won't end up in a Gunter von Hagens exhibition. The new law wouldn't change the procedures for donating bodies/organs/tissues to science either.

What are the arguments against?

There's clearly a liberty issue here – should the state have rights over the body after death? The good work to boost organ donation rates in Wales might be undermined if the system loses public confidence or makes people uncomfortable.

There are also moral and ethical questions – should organ donation be purely a gift? Would presumed consent violate religious beliefs about what should be done after death?

In my personal opinion because of the "soft opt-out" system proposed, controversy will be limited as long as the system for "opting-out" is well publicised and transparent.

If the Welsh Government had gone for a "hard opt-out" system – where consent would be presumed without consulting with relatives (unless the deceased had opted out) – then even liberal-minded people like myself would likely oppose the new law and it would be even more controversial.

No other pitfalls in sight?

On paper there shouldn't be any major constitutional or legal issues arising from this, though Alan Trench at Devolution Matters explores it in a bit more detail. Things are clearly a lot more complicated than appear.

Only xenotransplantation (transplantation between different species) is a reserved matter to Westminster if you go by the Scotland Act.

Transplantation requires consent as stipulated in the Human Tissues Act 2004, and under the proposed "soft" opt out system consent would still be sought.

Also, there's no sign that presumed consent would violate the Human Rights Act 1998 or the European Convention of Human Rights. Considering presumed consent is already used in several mainland European nations already, this was a given.

The only issues I can see arising are religious and ethical listed earlier, but the white paper does indicate that the Welsh Government would take personal/religious beliefs into account and are actively seeking such views for the consultation.

For students of politics, medicine or law, the Senedd debates in plenary and committee on this one could be worth watching....


  1. So would Welsh organs be available only to Welsh hospitals, or would hospitals all over the UK be able to request them?

    The danger is our body parts could become just another Welsh resource for England to exploit.

  2. As far as I know, Anon, the organs would be available to anyone requiring transplant in the UK. It's not as if people in England, Scotland and Northern Ireland are suddenly going to develop life threatening diseases requiring transplant just because the organ/tissue equivalent of Tesco has opened in Wales.

    Seeing them as a resource being exploited is the wrong attitude to take, in my most humble opinion. It's humanitarian aid, not comparable to energy, water or brain drains.

    It might even put pressure on England, Scotland & NI to follow Wales's lead but it's still a long way away yet.

  3. The only objection I have which is not stated in the article is, having to rely on the competance of some doctors, to decide if you really are dead, you only have to look at how many mistakes are made in the nhs with people who die due to incompetance/ mistakes to realise that! We in Wales have the highest rate of donations in the uk and many parts of europe, just why do they need to change that, I think that if this becomes law then organ donations in Wales will fall, I also think being selfish, organs donated in wales should first be offered to people in wales that need them.

  4. So I might die in Cardiff and there's someone in Swansea that desperately needs my kidneys, but alas there's someone else in say Birmingham that needs them even more urgently.
    So they then would end up in England, that does not have a presumed consent law of it's own ?
    Hardly fair is it?

    I'll be opting out until it's a UK wide policy.

  5. Roger - Any doctor who can't tell if a patient is dead or not is clearly in the wrong profession! However your point about the new law potentially putting off donors is a valid one.

    Anon - The organ donation system is UK wide, the new law won't change that. However organ donations are a lot more complicated than a black and white "who needs it most gets it".

    Organs must be biologically compatible for a start, for example blood types, and there's nothing devolution or independence can do to change blood types of individual people. As many organs could be coming the other way as outward. I'd go as far as suggest a pan-European organ donor system. You really don't want to limit the "pool" in this regard.

    Then there's travel time and urgency. In your example, the kidneys would probably still go to the person in Swansea (if they are compatible) because they are closer. But if the person in Birmingham was at deaths door, while the person in Swansea could live comfortably on dialysis, then doctors would rightly (again only if compatible) send them to Birmingham.