Tuesday 6 March 2012

An Absence of Ethics

The Journal of Medical Ethics isn't something that most of us would read on a regular basis, but when it starts publishing peer-reviewed papers calling for 'after-birth abortion' of disabled babies, maybe it's time to make an exception.

The Giubilini and Minerva paper 'After Birth Abortion: Why Should the Baby Live?' is every bit as stomach-churning as you might expect, but what makes it worse is an editorial blog by Julian Savulescu not just defending the decision to publish, but deliberately setting out to portray those who object to the paper as solely ascientific, racist, right-wing thugs.

The authors, Giubilini and Minerva, have now published an open letter on the JME blog, apologising if people have found the arguments offensive and saying that's because it was only intended to be read by  'fellow bio-ethicists'. Oddly enough I don't find that particularly reassuring, if you want to argue that disability makes me inherently less, then I'm going to find that offensive no matter where you make the argument. Even if you keep it completely to yourself it still demeans every disabled person out there.

Potentially even more disturbing (there's an awful lot of not very effective post-facto covering your backside going on at the JME) is the assertion in a blog by the JME's Associate Editor, the Reverend Professor Emeritus Ken Boyd, that "It has subsequently been suggested to me that people whose lives might have been ended by ‘after-birth abortion’ were this legal, might be deeply offended by this paper. If that is the case I am sorry, but I am also confident that many of these people are equally capable of mounting a robust academic reply to the paper which, again subject to peer-review, the Journal of Medical Ethics will be very willing to consider for publication." I'm sorry? You're a Reverend Professor Emeritus, the editor of a scientific journal covering a particularly esoteric area of philosophy, which has just argued that a disabled life is inherently a lesser life, and you a) needed someone else to tell you that it is incredibly offensive, and b) are convinced there are many of us capable of writing a counter-argument that will pass peer review? I doubt that we can find enough people of any description capable of writing at that standard in that sub-speciality to meet most people's definition of many, never mind among disabled people. There's a deeply unpleasant double standard at play here, it's all right for ethical specialists to claim that our life is not worth living, but for us to have a right to reply we have to jump through their professional hoops?

Getting back to the paper, let's be clear before going any further, some of the comments addressed at the authors are abusive, racist, and they even stretch as far as death threats, there can be no justification for abusive attacks of that nature. Yet those objections are not the only objections; I am proud to proclaim myself a bleeding heart liberal, I certainly have no truck with racism or discrimination in any way, shape or form, and my scientific/engineering background pretty much defines me, and there are plenty of similar responses, so seeing the editor seeking to dismiss anyone who objects as universally right-wing thugs and racists seems a little, well, unethical.

The paper starts from the explicitly Medical Model presumption that a disabled life is a lesser life and proceeds from that to define a disabled person as a non-person. Imagine the firestorm if it had argued a non-Caucasian life is a lesser life, a non-person. I am disabled, for me there can be no difference between the two positions. This is a frightening time for disabled people, we see a hardening of attitudes towards us, we face harassment in the streets if not outright assault (I'm into double figures myself with hate crime incidents), we are increasingly portrayed as fakes, frauds and scroungers by media and our own governments, and, perhaps most chillingly of all, we see a resurgence of eugenics within the bio-ethics community, and that community attempting to justify and defend those who spawn such hateful views (the authors and the editors can object to the emotive language once they have faced physical assault in the street from utter strangers simply for walking while disabled).

Disability hate crime in the UK has reached the point that rabbis are now drawing explicit parallels with Germany in the 1930s, any bio-ethicist should be well aware of what came next. I imagine the authors might argue that such things could never happen again, they certainly seem to have no clue about the constant threats disabled people are living under, but the entirety of Aktion T4! sprang from the argument that the life of a single baby was not worth living, doctors took away that child's name, made him a non-person, killed him, but we know now that his name was Gerhard Kretschmar, and that that one death opened the floodgates for a pogrom directed at Germany's own disabled people, serving as a prototype for all the horrors that are better known from the later Holocaust against Jews, Gypsies and others. Is the paper's position really any different to that put forward by Hitler's personal doctor when tasked to create a plan of action? The authors argue once more that disabled babies are non-people, and where that argument might lead in the current hostile environment towards disabled people is a prospect we are fully entitled to find very frightening. The authors don't even have the courage to call infanticide infanticide, labelling it instead 'post-birth abortion'. If their logic is flawless then it should hold whatever the name, yet to hide the reality of what they propose they obfuscate it behind a smokescreen of changing names and vaporous pseudo-logic. What does that tell us?

There are two differences this time around. Disabled people have a voice now and we will not go gentle into that good night. If ethicists argue that we are less, or defend those do, then they must expect to be regarded as the disablists their views reveal them to be, to be treated with the contempt they deserve and challenged for it, just as racists are challenged whenever they rear their ugly ideologies into the view of civilised people. The second difference is that bio-ethicists have been down this path before, they know the risks and where it might lead, they know that a disabled life is almost without exception a full and fulfilling one, but that the acceptance of disabled people into society as true equals is deeply problematical, with disability hate crime a very real threat. They have the professional responsibility not to set either of those points aside when debating the issue, and to demand a full and frank discussion of all of them as a minimal standard of any peer-reviewed paper. Ethics demands no less, but Ethics was failed by the decision to publish the paper, most especially by the decision to publish unchallenged and uncondemned.

My assessment, one I doubt I'm alone in within the disabled community, is that the leadership and rank and file of the bio-ethics establishment have been consistently failing at these tasks for the past decade or more, that they have neither actively argued the equal value of disabled life, nor adequately challenged those who try to advocate eugenics based euthanasia to justify the risks they raise for disabled people. To argue that disabled life is a lesser life is no different to racism, to defend the right to those views at a time when disabled people face a rising tide of harassment and hate is no different to defending racism in a racially charged environment. Will they rise to the challenge and stand alongside disabled people to do what is right, or are they condemned to repeat the lessons of history?

Time to clean house.


  1. A late update with a link to the JME blog discussion where I tried to get a bio-ethicist to understand why disabled people are concerned: http://blogs.bmj.com/medical-ethics/2012/03/05/some-responses-to-giubilini-and-minerva/

    Utter communications fail, apparently we don't even have a right to be concerned when something explicitly defines us as sub-human (both eugenics and infantilisation in action!)

  2. An editorial from 2005 illustrates that contempt for the concerns of disabled people over eugenics from the editors at the Journal of Medical Ethics wasn't some flash in the pan http://www.indymedia.org.uk/en/2005/01/303503.html

  3. I find these ethics journals have turned into little more than a way for eugenecists to exchange possible defences to avoid murder charges...epecially over the Liverpool Care Pathway of late...they can withdraw food as a 'choking risk', withdraw fluids as 'a pneumonia risk', withdraw monitoring arterial gases for CO build up as 'too invasive and painful',disconnect a perfectly functional cardiac defibrillator as 'the shocks it gives are painful'..and .then thwack you full of diamorphine/midazolam/cyclizine, all in the same syringe driver (reckless prescribing likely to induce a heart attack and suppress your breathing, according to the british national formulary) under the guise of 'care' :) You are quite right to be concerned ....they're just culling the disabled and high maitenance patients to save money...but as with the nazis,it has to look like 'care'....