Respecting the participants rights

Anecdotal evidence is the worst kind, but if I call these anecdotes "case studies" then maybe I will be excused.

This post came about after my recent sojourn at an Autism study weekend where I was privileged to run a workshop on Autistic culture and politics.

Anyway to the facts. I will not identify any particular studies by name, out of the same respect due to the researchers that they owe to participants (and also for other reasons that will become apparent)

Only one of these studies relates to autism, the other is mainstream 'disability studies' and the third a neurological study undertaken on the web.

Although this site has been concerned principally with what I have called the meta-ethics of social responsibility, studies nonetheless still owe that conventional ethical mark of not being injurious to their participants.

To begin with, the first study was a classic piece of qualitative research, which involved in depth interviews with a number of 'subjects' regarding their attitudes toward and personal experiences of disability and impairment.

I can honestly say I enjoyed this experience, even though I was recorded during what the researcher knew to be a stressful experience for me, just so that he could record the stress, it was still in the context of something I did every day, and it ended in this instance in the pub.

This researcher has been good enough to let his participants choose their own anonymous pseudonyms, and to provide them with details of the transcripts as he has written them up, checking with them whether they were happy for that detail to go into the research. Furthermore I enjoyed another more recent session in the pub with him, where he showed me more of his work. In this case I was quite happy not only with the way I was treated but with the eventual outcome of this research which will be to suggest alternative models of disability besides the social and the medical model.

The second piece of research was presented during one of the sessions at the Study weekend and concerned a similar piece of "ethnographic" research that I had just been participating in. I thought it appropriate, as this experience was still fresh in my mind to ask if the researcher had done any of the things with her participants, in terms of giving them the choice of pseudonym, letting them see and discuss the transcripts and involving them in the outcome of the research. She said that she had not. I thought after that session that never mind her intentions that she was treating the participants as grist to the academic mill. Interesting case studies to be reported and that was that. I have no doubt that in all other respects the research satisfied conventional ethical concerns as much as my own does.

The third piece of research has made me feel, as a participant seeing my contribution printed on a web site for all to see, as if I had been stripped naked and thrown into a crowded disco (I do know what that feels like because that happened to me once) I will not mention the site or the research because I don't want people to go and see all that, but this research that was conducted over the internet, not only has gathered together all my usenet postings on a certain topic (although they are under a pseudonym, it is nonetheless the actual name I signed the posting with and thus identifiable to many people) but that gathered together postings made on private medical fora where the researcher had obviously been lurking (indeed that is how I was recruited). Ok the first posts are available to anyone who can google, but the second set are only available to those signed on to the fora in question. The third level of transgression goes even higher, in that this same site contains all of the email correspondence between myself and the researcher which is essentially taking a medical history from me, as well as some private asides. I can't recall whether I gave him permission to use the correspondence in the research, I may have done, but I did not expect to find any of it any where else but in a journal or paper, certainly not for anyone to view on the internet.

In terms of what I personally gained from that errant piece of research I have to confess, I did gain a medical diagnosis and an explanation of a number of neurological symptoms I have had over a great many years and for which I had been searching for answers since my teens when I first became aware that they were not 'normal' and I do believe that the objective of this research in terms of meta-ethics is concerned with giving a more positive portrayal of that particular impairment much as the first piece of research is, and I don't suppose the conclusions of the two of them will be that far away from each other, even if one has been undertaken by a sociologist and the second a psychiatrist. But did the psychiatrist have to put every last detail of my "secret" history on the web?

All things to be considered by every researcher, and ending on a positive note. I have to say that I did hear a   a very good lecture on many of these ethical concerns during the study weekend so that I hope at least some autism researchers will pick up on this.

A succinct statement of the campaign.

Firstly a little housekeeping, the title of the blog has been changed to prevent any misleading conclusions, as the concern for ethics is not confined to Europe or the Uk, but in reality where ever research into Autism and related phenomena is encountered.

Secondly an attempt to sum up the principal aims of the campaign and the facts behind it.

1. Ethics should concern itself with more than just the participant researcher relationship.
2. Ethical review bodies ought to be concerned with the applications and implications of the research.
3. Research into the causation of Autism, genetic or otherwise has implications for the prevention of Autism.
4. Prevention as current understood, involves genetic counselling.
5. The current state of Autism research is such that no definite biological marker, or genetic component has yet been found which indicates a sufficiently significant risk of autism to justify either termination or the avoidance of pregnancy in any susceptible group.
6. That despite of the current state of knowledge, genetic testing is being offered and decisions regarding fertility and embryo implantation are being made on the basis of an inaccurate understanding of the current state of knowledge.
7. That such decisions and counselling is to be deplored on both ethical and scientific grounds.
8. It is suggested that amongst the reasons for such a poor understanding are:

• the paucity of science education amongst the lay public, which includes medical practitioners and administrators,
• the misrepresentation of research findings in the popular media,
• the failure of research institutions to take proper regard for the reporting of research when issuing press releases or granting interviews,
• The failure of ethics review bodies to sufficiently inform researchers of the wider public obligations that arise from improper reporting of or application of research when issuing guidelines or providing ethical oversight.

Obviously everything is subject to revision and if anyone supporting the campaign can see any reason why those terms need to be altered, it can be openly discussed.