Limited consent for presumed consent legislation

Controversial Welsh plans to introduce new legislation on organ donation have moved nearer by another small step.  Following the Welsh Assembly public consultation on ‘presumed consent’ to organ donation on death (more on the terminology used later in this blog) at the beginning of this year, the Welsh Assembly has now just published a report summarising the submissions.

This is interesting since it gives an idea of the level of public support for the proposals.  The public consultation paper was written on the premise that the Welsh are supportive of presumed consent legislation to increase organ donation rates: ‘our debates and consultations on this issue in recent years have convinced us that Wales is ready to take this step’.  The consultation paper therefore failed to even ask the question ‘do you support the introduction of presumed consent legislation or not?‘ and instead only asked about how the legislation can best be implemented.

Despite not being asked, of the 1,234 responses received, most indicated an overall view of the proposals.  Only a bare majority of respondents actually supported the proposals (642 respondents, 52%) while 39% (482 respondents) specifically said they did not support them in principle.

Those are the headline findings but in fact, the majority of the supportive responses were in the form of a standard letter circulated by an alliance of charities supportive of the proposals (485). A further 35 responses were in the form of a standard e-mail circulated by the British Heart Foundation.   None of these were counted as a single response. If they had been, that would have meant 520 fewer responses supporting the proposals (leaving 17% in favour), and therefore a clear majority opposing them (67%) (of people/organisations sending in a unique response). In other words, the majority of the unique, non-standard, responses were opposed to the proposals.  Clearly not the green light the Assembly was ‘presumably’ expecting or hoping for.

With public consultations such as these, respondents tend to fall into two camps – those strongly opposed and those strongly supportive of the issue under discussion. Those who sit it the middle somewhere do not usually make the effort to respond, so it can be harder to gauge their opinion,

This is where opinion polling is of interest, although of course this can be strongly affected by question wording.   So what does opinion polling find? The most recent poll in Wales, last week, found that 63% of voters were in favour of a law that presumes consent for organ donation.[1] Other polls have found similar results.

Again however, there are problems with assuming support for legislation based on the vagaries of public opinion polls. In the case of organ donation, if someone is asked a question along the lines: ‘do you support organ donation on death?’ the most likely answer will be yes. However when actually asked to donate themselves the number agreeing to proceed is far lower.  The BMA reports that 70-90% say, when questioned, that they support organ donation. Yet only 29% of the UK population have formally registered their wish to donate and 41-50% of relatives refuse donation where the deceased is not signed to the Organ Donor Register (ODR). 6% of families even refuse donation despite the deceased family member having authorised it during his or her lifetime. (See the recent BMA report for these figures).

What should we make of this? Clearly the primary issue is not so much about public opinion but about the principle of organ donation, and that has been well covered in previous blogs.  But what we can say about these public views of presumed consent for organ donation?

1. The Welsh consultation showed significant opposition to presumed consent both in numbers and in strength of feeling

2. A majority of the wider public may be in favour of presumed consent in principle, but a significant minority are opposed

3. Any legislation will therefore be highly divisive and will alienate at least one third of the public – a high price to pay (as well as being a very high price in pounds)

4. If passed, it would not be consensus legislation

5. It is doubtful whether most people really understand the issues and, particularly, the arguments against presumed consent

6. It is not possible to assume ‘presumed consent’ for the population if there is reasonable doubt that many would indeed consent.

This last point strengthens concerns that those who do not sign an opt-out register, but who could have, may also not be consenting.  Such people could include the following: those who are disorganised, apathetic, disabled, less well educated or informed, lacking full capacity, of different languages and race, suffering from mental illness, dependent, those who have less ready access to information and those changing their minds. Silence in these situations would not necessarily amount to consent. In such cases, consent for donation could not be assumed (‘presumed’), even if these groups of people have not signed an opt-out register.

The importance of the phrase ‘presumed consent’ is clearly central here.  And that has not been lost on either the Welsh Assembly or the authors of the recent BMA report on organ donation.  We, and others, have consistently argued that ‘presumed consent’ is a misnomer. The Archbishop of Wales says that: ‘Giving organs is the most generous act of self-giving imaginable but it has to be a choice that is freely embraced, not something that the State assumes. Put more crudely, it turns volunteers into conscripts. Presumed consent is not really consent at all, merely the assumption that there are no objections.’

These arguments have clearly been effective because proponents of the legislation have now changed their language. The Welsh Assembly no longer talks about ‘presumed consent’ but only ‘soft opt-out’.   Even more blatantly, the BMA state in their paper that ‘presumed consent’… is the term the BMA has traditionally used. This term is, however, controversial with people arguing that ‘presumed consent’ is not ‘consent’ at all but something rather different. The BMA has found that this has resulted in debate focusing on the terminology and thus detracting from the important debate about the merits, or otherwise, of the system itself…The BMA’s preferred terminology is ‘opt-out with safeguards’.

These two bodies understand that battles for favourable public opinion are often won or lost on terminology, on wording, on clever sound bites and on media coverage.  In this case, ‘soft opt-out with safeguards’ seems far less threatening and concerning than ‘presumed consent’ because it implies control still lies with the individual not the State.

Now that the summary of responses is issued, the next step is for a draft bill to be issued in June for public consultation. This will then go before the Welsh Assembly for legislative scrutiny. The process will take some time, which gives many more opportunities to be involved, ask questions, challenge wording changes and persuade public opinion that organ donation should remain as a gift.

Posted by Philippa Taylor

CMF Head of Public Policy