Why I'm Sceptical to the Idea of Harvesting Donor Organs from Living People

In a recent article in the Cambridge Quarterly of Health Care Ethics (alas behind a paywall for those of you who lack access to university library services or have a private subscription), it is argued that the so-called Death Donor Rule (DDR) of most (if not all) regulations of organ donation around the world, is not valid from a moral point of view. It is the Canadian bioethicist Walter Glannon, who argues that the requirement with regard to so-called vital organs – that is organs, the removal of which is not compatible with sustained life of the donor – that they should not be removed until the donor is dead in fact lacks support of relevant ethical arguments. The thesis and argument have been picked up by the shadily cloaked Christian/Catholic "bioethics news" webpage, BioEdge, where there is some cautious snickering and mockery, albeit as usual without any hint of argument (which is the usual BE style), and from there passed around on Twitter. 

Now, what Glannon points out is that death, in the present day of organ donation regulations, has become a purely man-made institution: Death is whatever is defined as death in relevant legal statutes. So, "brain death" is one such legal institution which makes vital organ donation compatible with the DDR, while "heart death" makes these two much more difficult or even impossible to combine. But these legal constructs do not become ethically relevant merely because we call them "death". To see what is ethically relevant, we have to look for what moral reasons there are for or against taking a vital organ. We may then compare the outcome of such an analysis to the DDR. This, it would seem, is what Glannon does, and he points to four interconnected reasons when it comes to the case of severely and irreparably brain-damaged patients:

1. That the removal of the vital organ does not harm the donor

2. That an earlier death does not deprive the donor of any meaningful or valuable life

3. That the removal of the organ and its subsequent use for transplantation is in line with the donor's known wants, as expressed by him-/herself or a validly appointed proxy

4. That the donation actually leads to a successful transplantation

What matters is not that the donor is or is not dead, or when death is declared, but that the donor or a surrogate consents, that the donor has an irreversible condition with no hope of meaningful recovery, that procurement does not cause the donor to experience pain and suffering, and that the donor’s intention is realized in a successful transplant.

From this Glannon also concludes that doctors or relatives who try to forestall or delay a donation of a vital organ can be argued to wrong the donor. This is called "paradoxical" by the BioEdge commentator without a hint of any argument. However, the conclusion would seem to follow swiftly from premises 1 and 3 – as long as conditions 2 and 4 are assumed to be met. Not acting on the donor's wants would be one way of going against those of his/her interests that are assumed to be of ethical relevance also by supporters of the DDR.

Glannon's conclusion is that:

We should reject the view that organ donors are beyond harm only after they have been declared dead and that they are harmed if organ procurement occurs before this time

Thus falls the ethical basis of the DDR, or so it may seem. However, while I accept Glannon's argument, I do not accept that it is a valid reason to remove the DDR. That is, while Glannon does support the idea that death (however it happens to be defined in a legal statute) is not by itself ethically relevant when looking at single cases (what is relevant is the presence or non-presence of harm, deprivation of goods or disrespect of wants), it does not follow from that claim that the DDR should be taken out of organ donation regulation.

The problem with Glannon's argument is that it assumes that the only reason for a legal rule is that it immediately reflects morally relevant facts in single cases, or that it gets it right from an ethical point of view in single cases. However, that is clearly not the only support for legal rules that there are. I, on my part, would argue that the strongest support of legal rules is about the overall impact of the legal system containing them. So, it is actually not important if legal statutes echo ethically valid norms or if they get it ethically right in every single case (or even most cases). The importance is about the legal system as whole getting it reasonably right on the level of the entire society, and that this system has enough popular support for this body of regulation to be sustainable. This may imply that some legal rules do echo ethical norms, or track them in application, however, that is a side-effect rather than a justification. What justifies the rule is that the system functions well on the whole on the basis of some plausible set of values.

Now, in light of this, we can see what is the problem with the idea of removing the DDR. The problem is, simply put, the strong reasons for not tampering with the legal rule against murder, manslaughter and other forms of unjustified homicide. For this is what we would have to do if we are to take away the DDR – we would have to say that intentionally cutting up a living person so that he or she dies is sometimes not a crime. The problem, of course, starts when we think about how to formulate and implement this sort of clause in a way that would be both legally secure and certain, socio-economically efficient (with regard to the problem of organ donation as well as the general interest of society not to have people going about killing each other for whatever reason, and the resources that would have to be spent of running the administration of the clause) and, on the basis of that, ethically justified. Now, I'm not trying to belittle the problem of the shortage of donor organs, that is indeed a problem. But is it a problem of a gravity that motivates starting to play around with the core statute in criminal law? I don't think so.

Continuing Official Catholic Confusion on the Morality of Child Molestation, Rape and Pedophilia

A new Pope has just been elected and immediately, one of the very cardinals that took part in the election-process (the so-called Conclave) is on the news making a massive fool of himself, as well as illustrating that the complete confusion and ethical morass within the official Catholic institutional establishment has not become any less than before. I have from time to time commented just a little bit on the amazing stupidity and deepest immorality of central official institutions and representatives of the Catholic Church when it comes to its dealing with allegations of systematic sexual child abuse against their own clergy. I am therefore not very surprised at this latest piece of folly that is reported in my country's leading daily this morning (here):

In a BBC interview, the Arch Bishop of Durban, one Wilfrid Fox Napier, states that child molesters and rapists are not properly to be held criminally responsible for their actions. While I'm not at all surprised that a Catholic Cardinal and Arch Bishop holds and expresses such an opinion – even less so since he represents the South African wing of the Church, known since before for airing massively confused official statements on sexual morality – I do have a few things to say about the way in which he tries to support it.

Here is what he says on the matter, quoting from the BBC interview:

'Cardinal Napier referred to paedophilia as "a psychological condition, a disorder".
"What do you do with disorders? You've got to try and put them right.
"If I - as a normal being - choose to break the law, knowing that I'm breaking the law, then I think I need to be punished."
He said he knew at least two priests, who became paedophiles after themselves being abused as children.

"Now don't tell me that those people are criminally responsible like somebody who chooses to do something like that. I don't think you can really take the position and say that person deserves to be punished. He was himself damaged."'

 Let us break down the argument in steps. Adding some hidden premises that are apparently assumed by the good Arch Bishop, the most likely (and potential least faulty) version would look something like this. It is rather complicated and partly sophisticated, and therefore needs to be presented in separate bundles of deductions, where I have put the important conclusions in bold type:

1. Pedophilia is a psychological disorder
2. Psychological disorders are conditions and not actions
3. People cannot be properly held criminally responsible for anything else than those of their actions that break the law
4. People cannot be properly held criminally responsible for being pedophiles

5. Sexual child abuse is caused by pedophilia

6. If an action that breaks the law is caused by a psychological disorder for which he/she cannot properly be held criminally responsible, then the person who performs it does not know that he/she is thereby breaking the law
7. If a person performs an unlawful action without knowing that it is against the law, then he/she cannot properly be held criminally responsible for performing that action.
8. If a person performs an action as a result of pedophilia, then he/she cannot properly be held criminally responsible for performing that action
9. No one can properly be held criminally responsible for sexual child abuse.

10. If an action that breaks the law is caused by a psychological disorder for which he/she cannot properly be held criminally responsible, then the person who performs it has not chosen to perform it
11. If a person performs an unlawful action without choosing to do so, then he/she cannot properly be held criminally responsible for performing that action.
12. Same as 8
13 Same as 9

14. Therefore (by 4, 5, 9 and 13): No one can properly be held criminally responsible for sexual child abuse

It is quite easy to spot the gaps, as well as the sinister rhetorical tricks employed, in this argument. To begin with the latter, the basis of Mr. Napier's argument is the completely plausible claim that pedophilia is a psychological disorder and that the criminal law system should not punish people for  having disorders. On this, I presume, we may all agree – pedophilia is in this respect no different from, e.g. psychopathy or kleptomania or, for that matter, the flu, being taller than 2 metres or shortsightedness. The law holds people people responsible for what they do – possibly in combination with why they did it – not for what they are. This is trivia, which the dear Bishop tries to create an impression having bearing on whether or not we should be held responsible for our actions.

However, as soon as the first step in that direction is taken (premise 5), trouble begins. For, as a matter of fact, it is by no means obviously true that sexual child abuse is caused by pedophilia. The thing is, you see, that it is rather the case that to the extent that someone is a pedophile in the sense that makes it into a disorder this simply means that they are prone to sexually abuse children, and the only indicator of that is that they in fact do so. That is, if someone is a pedophile in the sense of a disorder, then this is partly constituted by having on at least some occasion sexually abused a child. Similar things hold for many other psychological conditions that may be held out as disorders, such as sadism. Now, you might object that we may imagine someone who harbours sexual desires directed at children, but does not act on them – at least not in the form of actual abuse (but, e.g. fantasy only) and that such a person should be called a pedophile. Sure, I'd say, we may very well do so, but in that case, premise 1 of the argument becomes implausible, since what makes it sensible to say that a pedophile suffers from a psychological disorder is that this person does not direct his/her actions properly on the basis of prudence or social, moral or legal norms. It may further be observed, that if we thus would weaken the concept of pedophilia, premises 6 and 10 would be severely weakened as well. So, if this argument is to work, we need to hold on to a strong concept of pedophilia, where it means simply tendency to sexually abuse children and that, of course, does not tell us that pedophilia causes sexual child abuse, merely that acts sexual child abuse is an indicator of the mentioned tendency – i.e. pedophilia. The cause of the actions of sexual child abuse is not revealed.

However, just as the weaker concept of pedophilia would make trouble for premises 6 and 10, we can now see that also the stronger would – besides invalidating premise 5 that is. For the tendency to sexually molest children when provided with a (from the perpetrator's point of view) fitting opportunity would not, it seems to me, provide any reason to believe that a person having such a tendency is either unable to understand or know that sexual child abuse is against the law, or incapable of choosing to sexually abuse children. On the contrary, this tendency whereby the person selects certain occasions to perform acts of sexual child abuse, in fact supports the notion of them both knowing very well that it is against the law and performing acts of reasoning to make decisions about when to try to get away with the unlawful act and when not to. In short neither the fact that your actions result from an urge, or that they result from a tendency in virtue of past actions, invalidates that you may properly be held legally responsible for them. This is perfectly consistent with accepting the claim that such a person is not to be properly held criminally responsible for said urge or tendency, but for his/her actions.

So, why is the dear bishop making such a flawed argument? One explanation is, of course, the he is himself confused. However, a much more charitable and less insulting explanation is that he is doing his best to do what catholic officials always seem to be doing when the topic of sexual child abuse by clergy is raised – namely to protect his peers and defend the way in which the Catholic Church has been handling these things – that is, shielding hard criminals from the criminal justice system and on many occasions providing them with the opportunity to go on destroying the lives of children and youngsters in their care.

To see how this fits Mr. Napier's line of argument, we can inspect some possible corollaries (sub-conclusions) of its alleged conclusion (14). If 14 is true, it follows:

15. No Catholic clergy can properly be held criminally responsible for sexual child abuse

And if we for a moment forget that, legally and morally, we should all report suspected unlawful acts to the proper authorities, so that they can be investigated and decided on according to due process, thereby protecting legal security and rule of law, it would also follow:

16. The Catholic Church or its representatives are under no obligation to report suspected cases of sexual child abuse by clergy

So, as usual it comes down to the usual thing: trying to get away with it.

Threats, Libel, Calls for FDA & Government Action – and a Petition to the Governor: Research Ethics Morass at the University of Minnesota Psychiatry Continues

The sad and disgraceful story about the appalling unwillingness of the University of Minnesota to in any way investigate closer what several pieces of evidence suggest may very well be a major research ethics scandal in its psychiatry department continues. The scandal involves drug trials connected to several major Pharma companies, such as Astra-Zeneca, but for once it is not them who appear to be doing the bad deed – it is the university itself.

Former reports on this by myself are here, and here. The reporting of University of Minnesota bioethicist Carl Elliott is assembled here – an overview of the basic background story about apparently mishandled psychiatric drug trials linked to at least one death by suicide is here. In the Scientific American, blogger and clinical trial specialist Dr. Judy Stone is also reporting and commenting on the case, here.

So, what's new?

Well, first of all, not only does the University of Minnesota clearly bend its own rules inside out to avoid what would otherwise be the obvious line of action: investigate, clarify and report with full disclosure and transparency. It has, it now appears, sunk so low as to use its own General Counsel – one Mark Rotenberg, who just happens to be identical to the lawyer who has been attempting to whitewash this story and motivate the avoidance of investigations – to in so many words try to threat Elliott with possibly disciplinary actions for pressing on for an inquiry. Yes, that's right, a university threatens one of its academic employees – a bioethics professor at that – for simply insisting on that the truth be sought out and revealed. In short: for doing his job well.

In fact, not only that – the University of Minnesota President, Eric Kaler has chosen this well-timed moment to hint that research ethics regulation at the University, not least with regard to academia-industry collaboration in psychiatry may be "excessively burdensome" and expressing a "low tolerance of risk" and that "we’re afraid a misdeed of two decades ago will reappear again" – the latter obviously referring to past very serious misconduct cases (described in the post linked to above) in, where do you think? – yes indeed, the department of psychiatry. Nice.

Second, the University has finally tried to respond to the claim of Elliott that several patient consent and other forms seem to exist in duplicate but not differing – for instance, not all are signed! – versions, apparently originating from different times. This is covered in Elliott's former postings linked to above, as well as Dr. Stone's astute analysis in the Scientific American. The formerly mentioned General Counsel, Mark Rotenberg, responds on behalf of the university in an article in the Star Tribune to this is, again in so many words: Hey, you probably faked those yourself – or the families of the victims did!! That is, he doesn't mention any particular party and uses the word "authenticity", but in context the content is clear. Being a European, even though I am a Scandinavian and thus possibly with some kinship to the mysterious Minnesota ways of academia, I may be misinformed of some legal peculiarities: but isn't it at least a little bit legally troublesome to accuse other people of illegal actions (forgery of official legal documentation is a criminal act in Minnesota and the USA, isn't it?) without any shred of evidence?

Elliott's own response is the obvious and only sensible one (besides suing the guy for libel, that is): if you say so, help me to find out! Substantiate your claim! Open the files! Disclose the evidence! That is, run the investigation that should have been run ages ago, but that you and those you serve have denied and forestalled!

Third, Elliott has now officially written to both the Office of Civil Rights of the U.S. Department of Health and Human Services and to the Office of Compliance of the FDA to call for investigations of related parts of this troubling story. The letters you can see and download below.

   Letter to HHS Civil Rights About Possible HIPAA Violations by   MarkingsonCase

 

   Request  that FDA Office of Scientific Investigation to investigate "evaluation to consent" forms... by   MarkingsonCase

And Elliott is not the only one acting. A close friend and the mother of Dan Markingson, the young man whose death by suicide is clearly linked to one of the deeply suspicious psychiatry research trials involved in this potential scandal, is petitioning the Minnesota Governor to investigate the University of Minnesota for its refusal to act and investigate. You can read the statement and, if you want to, sign it yourself here.

There will be more, I'm sure......

New details on the University of Minnesota psychiatry morass: suspicion of vital documents falsified and hidden from court

More on what I posted on a few days ago with regard to a thickening enigma around the ethics of the so-called CAFÉ study – involving Astra-Zeneca and associated with at least one death – at the psychiatry department of the University of Minnesota, here.

To read the new developments, looki here! In short, as new evidence occurs the suspicions about a bona fide coverup, featuring falsified consent documents and other vital pieces of evidence hidden from court investigations – are strengthened.

I repeat myself when under stress: At the very least, the University of Minnesota should have a slight urge to look into to this, not least since it appears to be imperative according to its own regulative statutes.

More will follow, I'm sure.....

Continuing stinks out of University of Minnesota Psychiatry: If it looks like it, smells like it and sounds like it, at least it deserves an inquiry...

This is just to point interested readers to what looks more and more as a multi-layered bona fide research ethics scandal at the psychaitry department of the University of Minnesota, involving at least one death and possible falsified patient documents in order to fake proof of consent. My US colleague Carl Elliott has been covering this mess for a long time, patiently trying to have the university's own research intergrity administration take hold of the case, and work it as they should. However, instead of doing what a university in this situation is supposed to do – namely acting in a prudent and transparent way to undo any unsubstantiated suspicions – it continuously acts to sweep whatever crap it is they feel they need to hide under a dirty, old mat of hollow and increasingly unsound or even obviously invalid bureaucracy blabber.

Is it as simple and disgraceful as one commentator at Carl's blog suggest, that:

...the University of Minnesota will never look into these issues because they are scared too death of what they might find, or actually might have already found. /..../ The University at this point has no option but to stay the course of denial, for to give in and admit fault would open the flood gates...

??

Read more here.

Updates on this case will follow as they appear by way of Carl.