Tuesday 2 July 2013

Assembly opts in favour of opt out organ donation

Presumed consent organ donation is coming to Wales
after the Assembly approved new law today.
(Pic : Wales Online)
One of the most eye-catching pieces of legislation laid before the National Assembly has just been passed (eventually!) – the Human Transplantation Bill.

Within two years – and assuming this doesn't lead to a collision course with Westminster before Royal Assent - the Human Transplantation Act will create an "presumed consent" organ donation system for Welsh residents.

You should take the following information with a health warning (excuse the pun), as I'd imagine the Welsh Government and health authorities will explain it better before the new system comes into force.

Who will the presumed consent system apply to?

Everyone who dies in Wales, with the exception of :
  • Adults who aren't ordinarily resident in Wales (i.e tourists, prisoners, armed forces personnel stationed in Wales), or have lived in Wales for less than 12 months.
  • Adults, who prior to death, "lacked the capacity" to understand the system or give their consent.
  • Children (under 18s).
How will the new system work in practice?

It'll be presumed that a person consents to having their organs donated, unless :
  • They "opted out" on the donor register under the new system.
  • The person is alive – Consent will have to be given by them.
  • The person dies and appointed someone to decide on their behalf – Consent will have to be given by the appointed person.
  • They're a child - Consent will either have to be given when they're alive (and as long as they understand the system), or consent has to be sought from the parent/guardian or someone with a "qualifying relationship" (generally blood or step relatives).
  • A relative or long standing friend believes the deceased would object to their organs being donated.
So, despite the "presumed consent" label, it isn't absolute. It's what's been described as a "soft opt out" system. Some form of consent will still need to be sought, and relatives and friends will still have sway – but the wishes of the deceased overrides anything else.

What else does the law include?

A new organ donor register – Where people will be able to say whether they specifically consent or don't consent (opt out) to organ donation, as well as being able to decide which organs to donate. The latest explanatory memorandum (pdf) says this will be done at at a UK level, with an agreement that the Welsh Government pay half the costs of establishing the new register.

Promoting organ donation
- The Welsh Government/Health Minister will have a legal obligation to promote organ donation at least once a year, as well as public information campaigns on how the new donation system works. They'll have to report to the Assembly on how they've done this annually until 2018. 17 year olds will also have to be informed about the new system in the run up to their 18th birthday.

Appointing a representative – The Act lays out the arrangements for a person to appoint someone to make an organ donation decision on a their behalf (as noted further up). This is already in the Human Tissues Act 2004, but will allow Welsh Ministers to set regulations determining who can act as an appointed representative.

Creates new criminal offences relating to transplantation – It'll be illegal to carry out a transplant without consent (unless deemed under the opt-out system). It'll also be illegal to lie about transplant procedures or lie about someone giving consent when they haven't.

Storage of bodies for transplantation - Bodies of the recently deceased can be specifically stored for organ transplantation under the new system by the relevant authorities - care homes, coroners etc.

Excluded relevant materials
  • Welsh Government regulations will determine what body parts will or won't be eligible ("excluded relevant material") for transplantation under the new arrangements.
  • For transplantations involving "excluded relevant materials", consent will be explicitly sought, it won't be "opt out" like other body parts.
  • "Excluded relevant materials" will include composite tissues (tissues made up of multiple tissue types, like a limb or face) and transplants considered "novel". "Novel", I'm presuming, could include things like reproductive organs.
The fixed costs of setting up the scheme are said to be £7.6million between now and 2022. The aim is to have an extra 15 donors per year. However, if the scheme generates an extra 25 donors a year, it would be worth £250million to the Welsh NHS thanks to reduced costs of no longer having to use expensive treatments, and increased healthy life expectancy etc.

What this means

It isn't fair to say that everything about this is hunky dory, being an emotive topic. If people believe that organ donation becomes something "expected" rather than a gift, they could well decide to opt out because they don't trust the government. That's the controversial part.

Concerns have also been raised about whether NHS resources are going to be diverted towards this from elsewhere, as well as question marks over whether similar schemes and laws elsewhere in the world actually prove that an "opt out" system is successful.

In practical terms, the new system is likely only to be used a dozen or so times a year. However, if this law fulfills its intent, it'll save lives. It's probably laying the groundwork for a similar law across the UK too.

I might've been a bit mean in the past, so I think it's worth giving former Health Ministers Lesley Griffiths (Lab, Wrexham) and Edwina Hart (Lab, Gower) a double thumbs up. This is very much "Lesley's Law" I suppose - even if it was mooted during Edwina Hart's tenure - and she will have overseen the bulk of issues arising while it passed through the Senedd. Current Health Minister Mark Drakeford (Lab, Cardiff West) deserves credit for his time as chair of the Health Committee too, and for seeing the Bill through to the end.

But this is about more than backslapping, as all parties have played their part in bringing this about.

Those who oppose some of the principles of this - in particular Darren Millar AM (Con, Clwyd West) - also deserve credit for not scaremongering, being practical in opposition and in terms of the amendments they put forward.

There were some really ugly rumours and insinuations going around prior to the law passing. For example, there won't be any such thing as "organ harvesting", and believing such shows a complete misunderstanding of how organ transplantation works.

If the Local Democracy Act is an example of a law where you're left wondering why the Assembly even bothered, this one's the exact opposite. This sort of stuff does matter to people and deserves wider coverage. In fairness, it's got plenty of coverage across the media today - Welsh and UK.

The question, as always, remains as to whether enough people in Wales were fully aware of this in the build up to today?

I think this has been handled very well by the Assembly as a whole, and they earned their spurs today. It is, for now, the most controversial law passed by the National Assembly, and probably ever will be, barring the sorts of things we could do with independence or "devo max".

Historic? Perhaps. But it has to work - for prospective donors, those who want to opt out and those waiting for organs and a chance of a normal, healthy life.


  1. It's a historic attempt, definitely. This is how the Assembly and devolution could come of age. If it does stuff that is interesting, eye-catching, different to England (where their agenda is different) and well-intentioned.

    Welsh people need to know what sorts of values we have as a country. What we're about. We've taken some steps in that direction since devolution began, but it isn't yet cemented in the public consciousness.

    We need to be seen to be doing stuff ahead of neighbouring countries. Especially as I simply can't see us getting economic or financial powers any time soon.

    The bottom line of Welsh history as explained by Gwyn A. Williams is that Wales exists where and when we want it to. I think this is especially true as the world changes around us and as Scotland and England gradually decide their futures. Our politicians need to be making big moves and decisions that will define Wales and why a distinct (or even independent) Welsh politics is justified.

  2. Thanks, Anon.

    I'm not a fan of difference for difference's sake, however we should diverge from the rest of the UK if we believe it's in our interests to do so, or to experiment with policies that might not fit in with the British mainstream at present, but could suit Wales.

    This is only "historic" in that it's a law that tangibly affects every single one of us and, for now, is unique within the UK. We've done it on minor issues before like the bag charge, and I think we would've done it much sooner on other matters too - like same sex marriage and smoking restrictions - if we had the powers.

    Also, we needn't get too smug about our progressive values as Wales isn't really trailblazing here as similar laws exist in other countries. I think it's a good example of the Assembly and Welsh Government looking outside the "British Bubble" for once when developing a key public policy. But as I've said, it needs to work.

  3. No need for alarm, it won't work out.

    I do not wish my organs to be donated and yet I do not wish my name to appear directly on any donor register. Yes, a pseudonym by all means or a household address. But not my name.

    This is my right.

    Now tell me how such a system can ever work.

  4. Anon 23:11 - You can nominate a representative to make the decision on your behalf (to say no) or you can make sure relatives and friends know you would object, so they can object if they are asked to give consent.

    And, of course, you can opt out on the donor register, though I'm not sure if you can use a pseudonym or why you would want to if you were using an address.

    If you died alone, and the above didn't apply, then you would probably be subject to a post-mortem and become ineligible for transplant anyway. Similarly if you died in an accident that resulted in catastrophic injury, old age or from a serious disease.

    Organ donors tend to be young, healthy people who die in accidents or from diseases that leave the body mostly intact.

  5. Everyone has a right to anonymity, register of births and deaths excluded. But elements of The State, for understandable reasons, hate anonymity. 'Trust us', is the usual mantra.

    But history shows that if their is one thing we can be certain of it is that we cannot trust The State. Our State, their State, any State.

  6. "But history shows that if their is one thing we can be certain of it is that we cannot trust The State. Our State, their State, any State."

    Your own version of history maybe. Any organised human activity can be branded "The State". Yes it means wars, surveillance, authority and so on. But also health, education, roads, railways, incomes. History shows us several countries where an opt-out organ donation system works fine. Wales will do fine.

  7. I think it's good to have a healthy scepticism of government, Anon 10:53, but not when it borders on paranoia. The Welsh Government might be a clunky bunch, but they're hardly Pol Pot!

    "The State" is giving everyone the right to opt out of this if they're uncomfortable, and I hope that system will be as easily explained and transparent as possible. Presumed consent affects those who have, for whatever reason, decided neither to opt in or opt out.