4th Workshop: Consent

The fourth and final meeting as part of the current RSE workshops project will take place on Wednesday 5th February. The theme will be consent (or authorisation, as it is in Scots law) and the schedule is as follows: Paper 1. Ben Saunders (Stirling) ‘Should Willingness to Receive be Understood as Consent to Give?’ Paper 2. Barbara Neades (Napier) ‘Consent/Authorisation in Scottish Legislation’ Paper 3. Hugh McLachlan (Glasgow Caledonian) ‘Posthumous Organ Retrieval, Consent and Justification’ Paper 4. Henrietta Consolo (Glasgow) ‘Consent and Best Interests of the Patient in Controlled Donation after Circulatory Death’ Roundtable. What have we learned from the project as a whole? Future collaboration possibilities?

Organ Donation Debated on Ciao!

The opt-in/opt-out issue has been selected as 'current debate' (for the latter half of July, so now over) on consumer review/opinion site Ciao. See the entries here. I'm pleased to see that most appear to be in favour - though on closer inspection some are only really in favour of organ donation and are sceptical of opt-out.

Welsh Assembly Votes on Opt-Out Donation

The BBC reports here. As usual, 'opt out' is conflated with 'presumed consent'. The role of family is also raised - this is technically separate from whether we have an opt in or opt out system, though since family have different effects in each it is relevant.

Northern Ireland Consults on Opt-Out

Northern Ireland has just launched a public consultation on proposals to switch from an Opt-In to an Opt-Out system. I was particularly pleased to see that the BBC article on this made no mention of 'presumed consent' - an idea that I've criticised elsewhere. Instead, the proposal is put in straightforward terms: it makes donation easier for those who want to donate, while allowing a refusal for those that do not. Notably, however, the proposal is for a 'soft opt-out' in which the next of kin retain a veto: "However, it proposes to make little change to the current key role played by the family in the final decision in relation to donation of organs. A family would still be consulted for additional medical information and asked about any unregistered objection to donation.".

An Economist's Perspective

Economist Tim Harford considers some of the measures to increase organ procurement and suggests the importance of asking people to give their consent. (Thanks to Chris Bertram for directing me to this, on Twitter.)

I think Harford is right to say that many people, given the opportunity, will consent, so it's a good thing to ask people's views when, for instance, they apply for driving licences. It's unclear, however, whether this is sufficient to address the organ shortage. It's interesting that one reason he offers for 'rejecting presumed' is that it will not assure relatives of their loved one's wishes. As he asks, rhetorically, "If we fill our donor registry with auto-enrolled donors, will that really persuade distraught families to support transplants?"

This is all very well, but the unspoken assumption here is that family consent should be needed, along with that of individuals. Granted, perhaps in the opt-out system he was considering, this makes sense: the family should have the option to express an objection that the deceased may have had but never registered (a 'soft opt-out'). The danger, however, is that such systems potentially allow the family to override the wishes of the deceased. There have been a number of papers (for instance, this one) arguing that, even in an opt-out system, we ought not to consult the family: that the absence of objection from the deceased should be sufficient to license donation.

The appropriate role, if any, of families and next of kin is something we intend to explore in the next RSE Workshop.

UK Donor Increase

Organ donation is in the news today. Since the Organ Donation Taskforce, which reported in 2008, there's been a significant increase in the number of registered donors and, consequently, in the number of transplants performed.

This is welcome news, but it shouldn't blind us to the fact that demand still exceeds supply, with three people dying each day in the United Kingdom because of a lack of transplant organs (figure from the BBC article, linked above). It's important to consider ways in which we might continue to do even better, including for instance an opt-out system.

It's also notable that, according to the first article, "Last year, 125 families overruled an individual's intention to donate". The UK's present system allows relatives of the deceased to override his/her expressed wishes. Whether this is justifiable or not ought, I think, to be more debated. It's an issue that we intend to examine in the next RSE workshop.

Mixed Defaults

Since organ policy is a devolved matter, the Welsh Assembly has been pushing ahead with plans to switch to an opt-out policy. It emerged recently, however, that certain body parts - including hands, limbs, and faces - will not be included.

What does this mean? As far as I can see, it means that if you die without having registered any preferences over the use of your bodily remains, then your kidneys may be used but your hand may not be used. If you object to the use of your kidney, then you need to opt out of kidney donation. But if you're happy to have your hand used, then you need to opt in to hand donation. And, if for some reason, you're happy for your hand but not your kidney to be used, you need to opt in for hand donation and opt out of kidney donation.

There's no logical or principled reason why the default shouldn't take this mixed form but it seems to me to be undesirable in practice. Firstly, many people are now going to have to register preferences if they want their bodies treated according to their wishes (though this may not be such a bad thing). But it seems to invite potential confusion over what body parts will and will not be used and under what conditions.

Traditional opt in and opt out systems have a clear default: either everything will not be used or everything may be used (respectively). It's fair enough to allow individuals a choice over which parts to opt out or in, so that they can if they wish register as a kidney donor but not a hand donor. But I don't see the point of mixed defaults, which merely complicate and confuse the status quo.