Desperate patients campaigning publicly for living donor organs

Interesting debate in Canada this week. The short version is this: reportedly wealthy, well-liked owner of Ottawa Senators needs urgently a liver transplant. He (well, his friends, but that's beside the point) uses his means (access to mass media) to campaign publicly for a living donor organ donation. Within a few days there's hundreds potential donors, reportedly money isn't changing hands, but who knows. The hospital where he is being prepared for surgery says that he's likely to receive his - hopefully - life preserving transplant some time this week. The transplant success rate is anywhere between 85%-90%.

Naturally the media and the usual-suspect ethicists got all fired up about rich folks 'jumping the queue' of people waiting for transplant organs, and the ethics of it all.

I thought it might be good to sort thru some of the issues here.

The Canadian Liver Foundation published an instructive background report in 2013 that I do recommend to your attention. Reportedly, in Canada, about 5,000 patients die annually while waiting for liver transplants, tendency: numbers rising. About 400 patients receive successful transplants, roughly every third patient waiting for a liver transplant dies because there are insufficient numbers of donors. Importantly, living donor donations (relatives, friends, otherwise altruistic others) don't actually affect people on the mentioned waiting lists directly, because these waiting lists are for people waiting for donations from deceased donors (ie folks who signed up to be organ donors in case of their demise) . If you manage to coax your workmate or a suitable relative into donating bits and pieces of their liver you will likely be able to live, unlike many of those who fail to do so and who keep on languishing on our waiting lists. Living donors regenerate their livers within a few months, the surgery is reportedly a relatively unproblematic, it's a low-risk procedure requiring of you to take a few weeks off work. So, it is a sacrifice, but not a major sacrifice, considering that human lives are at stake.

When you look at the Ottawa club owner's situation, it's not clear that he is guilty of any objectionable behaviour. Those folks who responded to his plea would not have donated to random others, they wanted to help him. Reportedly he is 'well liked'. Nobody stuck on a waiting list was any worse off as a result of his high-profile attempt at getting his hands on a living donor liver.

What is problematic isn't so much this individual's response, what is objectionable is a system that gives rise to such responses. While clinical need is a reasonable prioritisation and triage criterion, 'whoever shouts loudest' or is 'most likeable' are not ethically defensible selection criteria. And yet, if 'whoever shouts loudest' does not affect the existing waiting list negatively, it seems to me that there is no good reason for people not to try to 'shout loudest' given that their survival depends on it.

What ought to be criticised is the lack of available transplant organs that gives rise to such activities. Here much could be done to improve our current status quo, an immediately available strategy could be to switch our donation systems to an opt-out or presumed consent system. This is known to increase available transplant organs significantly. We should investigate the possibility of incentivising potential organ donors financially. There are various questions that need to be answered prior to implementing payments for organs, among them concerns about the exploitation of vulnerable, impoverished people as well as what the actual impact of such incentives would be on the availability of transplant organs.

Australian Academics' Confused Responses to Sacking of Medical Journal of Australia Editor

The Board of the Australian Medical Association (AMA) fired yet another Editor in Chief of its flagship publication, the Medical Journal of Australia.  Australian public health icon Stephen Leeder is the latest victim of the AMA's shenanigans. The MJA, like the Canadian Medical Association Journal, is by and large an also-run kind of academic publication. Doctors in those countries get a free copy by virtue of their membership in the association, it's doubtful that they do much more than check job ads and perhaps read the odd editorial during a break. Nobody would seriously expect cutting edge medical research findings of international significance published in these sorts of publication. However, they do serve an important role as regional medical publications.

Often these journals are run in manners that can best be described as unprofessional, by the associations that own them. There are plenty of examples of interference with the editorial independence of editors by these associations, the half-life of editors appointed by them is typically low, too.

For some reason good people continue to apply for these positions, only to be shafted at the next unexpected opportunity. What happened this time around? Apparently the AMA, behind Leeder's back, decided to outsource the production of the journal to international publishing behemoth Elsevier. Elsevier is publisher of illustrious publications among medical journals that you will have actually heard of before, such as for instance The Lancet. Like most international publishing houses Elsevier has a dreadful reputation among academics, mostly for its price gauging (ask your librarian in case you have doubts about this claim), but also for a range of deeply unethical activities such as creating fake medical journals to promote particular drugs for pharmaceutical companies.

It is not at all unreasonable for Leeder to not want to be involved with Elsevier and leave (or get fired by the AMA if he refuses to leave). The same is true for the members of the journal's Editorial Advisory Committee who also resigned bar one (someone looking for an Editor-in-Chief job by any chance?). And yes, Leeder had good reason to question  the decision and should have resigned in a huff over the shenanigans that happened mostly behind his back. Folks are also correct to be upset about the AMA's decision to go to bed with Elsevier, of all commercial publishers that would have been willing to take over the production of the journal. Fair enough criticism.

For some reason in Down Under this is also debated as a threat to editorial independence. Reports the Sydney Morning Herald, 'one of the signatories, Professor Gary Wittert, the head of medicine at Adelaide University, said AMPCo's track record in sacking editors, including Dr Annette Katelaris in 2012, and its commercial arrangements with Elsevier "does not inspire confidence in editorial independence".' This charge clearly doesn't stick. As of today there is no evidence that Elsevier interferes with the editorial independence (ie the published content) of its editors. It is as simple as that.

A bunch of Australian academics that wrote to the AMA Board to criticise the decision also lamented that The Lancet has published a controversial piece about goings-on in Gaza as well as a controversial paper on vaccines and autism that it failed to retract for about a decade. That is about as bizarre a complaint as it gets. Here the publisher is in effect held accountable for non-interference with its journal editor's editorial independence, and that is also held against it by these academics. Medical journal editors in days gone by were crusaders for particular causes (in the current Lancet editor's case it's global health), and they were expected to write and publish sharply worded editorials with a view to changing the world of health. In this instance Australian academics think that's another reason why the AMA called it wrongly, they don't want to see their journal being produced by a publisher that respects its editors doing precisely that. In any case, it is worth repeating that Elsevier wouldn't even have that sort of oversight in the case of the MJA, because it's not that the journal is being sold to the company, only its production is outsourced to it.

The owners of journals are well within their rights to change the production modi of their journals. They can even outsource the production to international publishing houses (eg in bioethics the Hastings Center's Hastings Center Report is these days produced to some extent by Wiley, with zero impact on the publication's editorial independence). Editors are well within their rights to protest such decisions and to resign (or face the chop) if they ultimately do not wish to go along with such commercial decisions. A threat to editorial independence such decisions are not.

One would expect senior academics to appreciate these differences.

Treatment resistant depression and access to assisted dying

I have long been in favour of offering access to assisted dying to competent people suffering from treatment resistant major depressive disorder. Other than the occasional newspaper column or blog entry I didn't have time to actually write a proper peer reviewed paper on the issue. Well, that's finally rectified. It came out yesterday. I jointly authored it with Suzanne van de Vathorst of Amsterdam University's Medical Centre. Here's the abstract:

Competent patients suffering from treatment-resistant depressive disorder should be treated no different in the context of assisted dying to other patients suffering from chronic conditions that render their lives permanently not worth living to them. Jurisdictions that are considering, or that have, decriminalised assisted dying are discriminating unfairly against patients suffering from treatment-resistant depression if they exclude such patients from the class of citizens entitled to receive assistance in dying.

Sam Harris vs Noam Chomsky - atheist writer in search of a cause?

It was one of those Facebook moments, I saw a link to Sam Harris' website promising an exchange between him and Noam Chomsky. I thought that that would likely be an odd conversation to have. Here's a neuroscientist who essentially wrote one short - but bestselling - atheist polemic that I enjoyed reading a great deal. Then came a dreadful book on how science can determine human values and I didn't bother reading whatever he produced since then. Well, then there's Noam Chomsky. You will know (of) Noam Chomsky. He doesn't need an introduction. Love him or loathe him, unlike Harris he is one of America's foremost intellectuals.

I have come to know Chomsky as an invariably courteous correspondent who takes the time to reply to emails even while being overwhelmed with many other competing demands on his time. I couldn't believe - and I encourage you to read the beginning of Harris' exchange with Chomsky - Harris approach to this exchange. You would have thought that there would have been a mutual interest on both sides to have a public debate with a view to publishing the content of that debate.

Nothing could be further from the truth. Harris tells Chomsky that there are purported millions of followers both have that would just appreciate this debate. Chomsky doesn't clearly care one way or another. I must say, I have never heard such nonsense before. I can't wait for Harris to write to the Pope with a similar declaration, insisting that the Pope just must reply to him, because both men have millions of followers that can't wait to read said exchange.

Anyhow, I wasn't surprised to see Chomsky being too polite to tell Harris to go away and leave him alone (he tried initially, but being the guy he is, he eventually relents and engages Harris). Harris, ever keen on publicity, writes early on that he wants Chomsky to reply in such a way that the exchange can be published. Chomsky says 'no', it's one thing to agree to an informal email forth-n-back with someone harassing you for replies, it's quite another to see that published. Well, to cut a long (email conversation) short, Harris eventually coaxes Chomsky into agreeing to let him publish the exchange on his website.  You can tell, Chomsky mostly wants to end the conversation, so he succumbs to Harris bugging him, in order to move on with his actual work, rather than indulge Harris any longer.

I can't help but wonder what Harris' next publicity stunt will look like. My bet, Harris emails Pope. Dreadul, just dreadful. I finally got the meaning of 'people full of themselves'. It tells you all that you need to know about Harris that he chose to actually publish this exchange.