I have to acknowledge that Autism speaks do have a lot of money and influence which is why it is impossible to talk about the ethics of autism research without touching upon them somewhere.
Some time ago I became aware that Autism speaks were trying to solicit the support of other organisations for their brain tissue donation programme. To their credit the organisation I belong to refused to endorse the project outright (it being outwith their charitable remit apart from anything else) however they did agree that since this programme existed it would be churlish of them not to make people aware of it, but to reserve any moral judgement for or against.
Thus it was that I found myself in the middle of a somewhat poorly attended breakout session at an international conference, where I was able to put a number of my concerns and questions to the British contingent of Autism Speaks directly.
The ethics of tissue donation itself has a shady history from grave robbing and the anatomisation of condemned criminals, to Burke and Hare and the atrocities of the Nazi and Japanese death camps. I am not concerned with whether it is ever right to donate ones brain to medical research, and I am not concerned with whether that does on the whole advance medical science or not. I am sure that there are circumstances where it does.
What I am concerned about in this particular instance are three things:
- Informed consent
- The ethical implications for the target population in terms of the repercussions on that community.
- And last but not least the efficacy and value to science of that tissue altogether.
I do not give this triad in any particular order of priority because that begs the question I asked before; Which is worst, incompetent science or unscrupulous science?
Neither do I intend to answer all of these questions at once, as this is intended to be a short series starting with the most general and working inwards to the specifics.
So what might any scientist say, considering that the popular climate is against such and such an action, as it surely was in earlier times given the popular religious sentiments about the resurrection and necessity for having a whole body to present ones case to the Lord on judgement day for if anyone knows anything of the history of Victorian England, (and I guess it was much the same all over Europe and the USA too) there were numerous scandals regarding the fate of human remains in sundry overcrowded burial grounds. This was a moral panic of the first order, described if my memory is correct in James Curl's Death The Victorian Celebration of Death Sutton 2001.
One might argue from a Benthamite Perspective (as I am sure Dr Knox of Edinburgh did) that 'what you don’t know is not going to hurt you', and that 'the end justifies the means'. I expect that may well have been the ethic behind the events at Alder Hey as well, but as this report suggests the case is far from as simple as that.
“Ah but this is not comparable” I hear my critics say .. “Autism Speaks are not doing anything underhand “ runs the argument “and science will benefit in the long run”
I am coming to that in the next episode....