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?

Womb Transplants in Sweden

The BBC reports that nine women have received womb transplants in Sweden. I'm not clear from the story whether this is a first or not. It mentions that womb transplants have been attempted before but failed to produce babies; the implicature I take it is that the transplant itself was successful. But these nine women haven't yet had babies either, so it's not clear what advance - if any - this is over the previous attempts. Still, if they are able to carry a baby (conceived through IVF), this transplant could apparently aid 15,000 women in the UK. It's unclear where that many wombs would come from though - these were apparently donated by living relatives, I don't know whether wombs can be taken from deceased donors.

Behavioural Insights

The Cabinet Office Behavioural Insight Team recently published preliminary results of a randomised control test looking at the effect of different messages on donor registration: their report can be found here (1.2MB pdf). They found that a message stressing reciprocity had the greatest effect on increasing registrations. Interestingly, putting a picture of a group of people alongside an appeal resulted in fewer registrations that a message without a picture.

Branded Organs

Christmas is, of course, the season for gift-giving, but I've not seen a lot of coverage recently regarding organ donation as the gift of life. One story that has been in the news is that of a surgeon who carved his initials on a patient's liver. The BBC provides an ethical analysis here.

Heart Transplant Survival Record

A British heart transplant patient has entered the record books, surviving 31 years (and counting) since receiving a heart transplant in 1982. A clear demonstration of the potential benefits that a transplant can bring.

Moorlock on Queue-Jumping

An interesting (short and for-public) piece by Greg Moorlock here on the merits and problems of an Israeli-style priority for donors scheme here. It also connects back to our previous discussion of families, noting that the family veto will almost certainly have to be abolished if priority schemes are to work. Very relevant for what we've recently been discussing and highly recommended.

Benefits of Live Donation

A heart-warming story about an 'altruistic' (or live) kidney donor receiving a letter of thanks from the family she helped here. It's good to see donation get regular good press, rather than only being covered when there are scandals.

For the record, the scare quotes round 'altruistic' in the first sentence are not intended to question Ms Pretty's obvious altruism; rather, I find it odd that live donors who donate to strangers (rather than relatives) are referred to as 'altruistic donors', given the commonplace belief that all donations should be altruistic - a reasoning which is often appealed to in order to resist incentives for donors.

If you're interested in this issue, there's a nice piece by Greg Moorlock discussing the altruism requirement in the Journal of Medical Ethics (open access). The next meeting of the RSE project, on Saturday 14th September, will focus on incentives and inducements, so look out for further posts on that theme.

Record Transplants in UK

A record number of organ transplants took place in 2012, the BBC reports. The increase of 6% on the previous year is largely attributed to an increase in the number of registered donors, which suggests that the limiting factor on transplants was indeed donations, rather than space in operating theatres. Of course, a dramatic increase in the number of donors may see some other factor, such as space in operating theatres, become the new limiting factor. But, for now, it seems that our focus should be on increasing decisions to donate, whether from individuals or their families.

'Dad has gone from Sick to Superman'

Organ donation doesn't simply save lives, in the sense of keeping people (barely) alive, but it allows them to lead much fuller, more normal lives, as this inspiring story of a father swimming from Alcatraz to shore to celebrate five years since his double lung transplant shows. It's a great example of how much of a difference a transplant can make to the recipient's quality of life, but also comes with important reminders about the limits of what transplants can achieve "The current average survival period of a lung recipient in the US and Europe is five years. Statistics say that the current 10-year survival rate of a lung transplant patient is 30%, meaning that only one out of every three patients will celebrate their 10th anniversary". Still, even five more years of healthy life is a considerable achievement, and especially valuable for someone like Gavin Maitland with young children.

Holby City Controversy

I don't watch Holby City, but it seems that a current story about organ donation has generated some bad publicity, after breaching several guidelines, including a donation proceeding after the withdrawal of consent. According to this BBC article, "This is an ongoing story and in the weeks to come viewers will see the main character Mo face up to the fallout of her actions".

Given that relatives of donors often report some comfort (from knowing good came out of their personal tragedy), while those who refuse consent often report regret, I hope viewers see some of this in the later storyline.

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.

The Role of the Family

Just 3-4 weeks ago we (that is, members of my RSE project on organ donation) were discussing the role of the family in decisions over donation - for instance whether next of kind should be able to override the wishes of the deceased individual (in either direction). Now it's national news!

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.

Donor Registration on Facebook

I was interviewed on Facebook's drive to increase organ donation a couple of times by a Canadian journalist (the results can be found here and here).

I've just seen this report, suggesting that there did seem to be a boost in donation rates following the Facebook initiative. I've not read the actual academic article, but I assume the authors at least attempted to show causation, rather than mere correlation.

RSE Project featured in The Herald

Monday's event on the role of the family in donation decisions is mentioned here. What's not so clear from this brief piece is that the family can override the deceased's wishes in either an opt in or an opt out system. This piece may come across as concerned with an objection to an opt out system, which is not the intention.

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.".

Commemorating Donors

If I understand this story correctly, it seems that over £10,000 is being spent on a stained glass window to commemorate organ donors (£6,800 from the Tayside NHS Board Endowment Fund, plus £3,500 from Revival). It's an interesting question whether this is money well spent, or whether it could be used to fund potentially life-saving (or improving) treatment.

I think a common immediate reaction would be that it's a 'waste' of NHS (and other) money that could have been spent more productively. But, who knows, perhaps such gestures will encourage more people to donate, if only by generating publicity? I'd be interested to know whether any empirical work had been done on such matters. I don't, however, think its justification depends entirely on these instrumental considerations though. Arguably, norms of gratitude and reciprocity may make it appropriate to do something to recognise the gift of donors.

Bioethical Expertise

There's an interesting, though perhaps slightly obscure, Guardian column on the notion of expertise in bioethics here. The author, Nathan Emmerich, suggests that we should be wary of making professional bioethicists into a 'priestly caste'. I'd suggest that professional bioethicists may be better than priests, but I think he has a point about moral knowledge/expertise and deference.

The moral or political philosopher doesn't have the kind of expertise that delivers answers that others must simply defer to. I frequently stress to my students that an argument from authority is worthless and that they need to assess what they read critically. Does this mean that there is no such thing as moral expertise? Well, not exactly - it all depends what you mean by 'expertise'.

All of us are capable of thinking deeply and careful about important moral questions. Those who research, or have studied, moral philosophy have an advantage in that they have spent more time than most engaged in such reflection and will presumably be familiar with certain argumentative moves (e.g. slippery slopes) and common fallacies. Thus, we might hope, they will be less likely to reach the conclusions that they do on the basis of bad reasoning and so, hopefully, less likely to reach bad conclusions.

To the worry that relying on moral experts is undemocratic, I think the appropriate response is the broadly Millian one, that the value of free speech is that it allows bad arguments to be confronted by better ones. Experts shouldn't be able to silence ordinary people in virtue of their expertise - our basis for trust in their judgements should rest on the fact that they cannot be defeated by opposing arguments. (There is, of course, a problem here is saying who wins an argument; the quality of public debate is often lamentably poor.)

I don't think that anything I say here challenges Emmerich's position. He concludes "Expert bioethicists cannot allow themselves to become a priestly caste. They must engage with the public and, in doing so, become more fully engaged by and with their concerns", which is not to say that there is no expertise in bioethics, but only that expert bioethicists must engage with the public. That's something I wholeheartedly agree with and one of the purposes of this blog, to facilitate engagement and exchange of view.

David Hunter has his own response to Emmerich on the BMJ blog.

Nudge, Nudge

I discovered a 'new' (as in, new to me) weblog about nudging here, run by a group of geographers (mostly) from Aberystwyth. I've not thoroughly explored yet, but it looks interesting. In particular, of relevance here, are their comments on organ donation. (Richard Thaler's own favoured position is 'prompted choice', rather than 'presumed consent'.) Another interesting point is that the term 'nudge' was suggested by the publisher. Perhaps this explains why Thaler and Sunstein (infamously) don't clearly define it...

This all came to my attention because one of the blog authors, Jessica Pykett, is speaking at Stirling next week.

Regrowing Livers

The fact that livers can regrow means that it's sometimes possible to take a liver lobe from a healthy donor, transplant it to someone suffering liver failure, and for both to end up with a fully functioning liver - as reported here. Recent evidence, however, suggests that this same ability means that some people's need for a transplant is only temporary, since their damaged livers may repair themselves.

Despite the focus on transplants saving lives, it shouldn't be forgotten that it's preferable if people don't need a transplant at all, saving them from major operations and a lifetime of immunosuppressant drugs. Perhaps the gap between supply and demand can be reduced, in part, by reducing demand. And, of course, it's preferable that livers that are available for transplant go to those that really need them (long term).