I absolutely agree.

Surely too it would not be beyond the competence of this gathered assembly here to come up with an interdisciplinary and extrauniversity list of potential research volunteers, not under control of any one department or University to avoid patronage. Of course there is already a list of (presumably suitably vetted) autistic research volunteers maintained by the usual suspects at Cambridge, but you try accessing it!

If we make enough noise we will be heard but being listened too takes a little more and my fear is that the response to the clamour could easily take the form of protective tokenism, of adopting some “clean” token representative onto existing committees, not so much placate us as to placate outside critics who may accuse them of doing nothing. You know, the “lets chose a paralympian that will make us look cool” approach.

There is an ethics discussion list on JISCMAIL ARMA ETHICS, but traffic is low, the last post was on gaining consent by email.

A perusal of JISCMAIL will also reveal NEURODIVERSE-ETHICS with a tremendous irony. I maintain the list on behalf of a somewhat self appointed ethics group concerned with ethics in autism research. However  both the list and the group are closed, it is invitation only. Not because I will it so but because I am a mere cog in the machine, maintained by a professor of medical ethics in a law school I shall not name. The group has to my mind lost the plot long ago and needs to be opened up, instead it has ceased meeting regularly and has practically stagnated, it’s only focus being to run a conference now and then L Well that is academia for you.

Larry

My first degree and my initial research were in maths.  I changed, partly because I was not quite good enough as a mathematician and partly because I wanted something more immediately relevant.  Pure maths is relevant and at the basis of all sorts of things, but its applications take longer to come through.

Having thought about it, the ideal ethical review process would be by the relevant group of disabled people from an organisation of disabled people, in this case autistic women from an organisation of autistic people.  In the case of research with people with learning difficulties, I think it is people with learning difficulties from an organisation and supported by advocates and assistants/support people of their own choosing who should be doing the ethical review, not other people making decisions about their capacity.  

In terms of the social model the issue is professionals etc not being able to provide information in an appropriate format and interact with people with learning difficulties in order to get consent, not their inability to give it.   Obviously there are groups for which it is very difficult to set up good procedures to get informed consent, but who may still want to be involved in research and then things become more difficult and may take a lot longer.  There is a difference between legality and ethics.  Following the Mental Health Capacity Act presumably ensures behaviour within the law, but is not necessarily ethical or how people 'protected' by the act necessarily want to be treated.   

I have been told that I need to go through NHS Ethics, which I think is to do with the labelling of disabled people.  We are automatically 'vulnerable' and 'patients'.  I have tried to argue against this, but am not getting anywhere.  I will however assume unless told otherwise that it is sufficient to go through NHS Ethics and I do not need to go through university procedures as well.

Ethical procedures tend to just consider research involving people (and animals to a limited, but unsatisfactory extent) and not ethical procedures and practices of other types of research.  They also ignore the ethics of the nature of the research e.g. military work.  They often ignore the real ethical issues and going through ethical procedures is no guarantee researchers act ethically in practice.  I am not suggesting ongoing oversight of work my university committees, but ongoing oversight by the relevant organisation of disabled people might be a good idea.     
Marion

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