Saturday, March 06, 2010

Campaign to end discrimination in human fertilisation (update)

Readers may recall a recent blog post, highlighting a particular incidence of such discrimination here and now, and may recall my intent to do some wider campaigning around this issue and wonder what happened.

Well academic work got in the way, that is what happened. However it is time to become active again and provide an update.

To begin with the expected response from an email campaign to contact a number of prominent researchers and names in the field of autism exacted a very poor response. This maybe because the email header was caught in too many spam filters, it maybe that the header sounded like an appeal for funds, not an appeal for action. It may also be that those I sought to contact were equally as busy as me in their academic endeavours and would need reminding. This latter I do intend to pick up on notwithstanding using other methods besides email to prompt a response, especially where the opportunity presents.

The second part of this report deals with the biotethics debate I attended recently. This too was caught up in delays and was postponed from it's original date to a date earlier this week, which fortunately for me co-incided with a stay in London.

The conclusions of the debate even for me with only a lay understanding of genetics, seem pretty clear. Any claims that any disorder has a single or a simple universal marker is very much contrary to the research that is going on into both the genetics and the etiology of various conditions as diverse as bipolar, autism, or Schizophrenia even if the current categories are in themselves sufficiently robust (which is another story)

That does not however mean on the other hand a charter for every crank with an environmental or dietary axe to grind. Matters are complex that is all, and whole books could be written on the complexity.

What is evident to me r is the dangers that are presented from over simplistic reporting of the research, whatever direction it is taking. Journalists like simple headlines, they like certainty not a series of unknown unknowns, and unfortunately those sponsoring the research often want to grab the headlines to, to the consternation of the people actually undertaking the research as this is all part of an economy of academic league tables and journal impact factor.

Often preliminary research findings will be reported before they have been published in peer reviewed journals, indeed sometimes the research is never published at all because it has been found wanting in various ways but the headlines remain.

One need not mention the classic example of Dr Wakefield's now withdrawn and discredited study as an example, there are many others out there whose results are not as conclusive as the headlines suggest, or that do not even say that the headlines suggest.

The problem is however that people do act on these conclusions, companies do offer genetic tests, insurance companies do revise their actuarial schedules, and discrimination of the kind that first drew my attention to this issue does occur.

Denial of equal rights to be the progenitor of a child on account of a false understanding of the science by people who really ought to know better.

What is the solution?

I think at one level it is for researchers to show more responsibility for the way their research is interpreted. For funders and academia likewise.

It is important for ethics review bodies to add an additional dimension to the considerations of any experiment or study. To go beyond the immediate concerns of the participants, to consider the effects it has upon those who have not chosen to be part of the study, but who are nonetheless implicated in terms of it's outcome.

I propose various actions to further this as a campaign and urge people on all sides of any particular divide over "neurodiversity" to give this equal worth, some fights are too important to let our individual differences of opinion get in the way. Bad science is bad science, and bad reporting even worse because it has implications for us all.

Anyway watch this space and keep watching, more will follow....

10 comments:

jonathan said...
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The author said...
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jonathan said...
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The author said...

Jonathan, I have removed your comment and my reply to it, because I have decided that this is not the place to discuss the merits or otherwise of specific researchers, whose 'research' (as against ethics) one either does, or does not approve of. I am concerned in this campaign with *ethics* over a broader canvas of research, and what the received wisdom from such research is in terms of the impact upon decisions with regard to the worth of a group stigmatised by the outcomes, given that the discrimination is already taking place as emphasised in the preliminary blog to this one a month or so ago.

Your disagreement with me is known, and this is not in the nature of censorship, there is plenty of opportunity for us to discuss that disagreement elsewhere.

Socrates said...

If a researcher is too busy to reply to an email of that nature then they have their priorities wrong.

It's not difficult to find superficial recognition from academics, of the importance of the implications of Autism research, but few save from Gernsbacher actually seem to do anything about it.

It's not good enough.

If Baron-Cohen, Happé et al can find the time to visit the New Republic Blog to my invective spew, they can bloody well find the time to reply to you.

Swear at them, call them Eugenicists, say they look good in nothing but their PhD's on a cold day and they start squealing in outrage and firing off emails left, right and centre.

Ask them nicely and they blank you.

I gave all this up for grown-up sotto voce advocacy and look where sitting down for a nice cup of tea and a polite chat gets us.

At this rate Socrates will be doing a Brian Haw outside the ARC.

The author said...

The thing is it hasn't even got to the three strikes and you are out phase due to my own laxity in following up, and having had a lot of academic stuff to catch up with (still have) I have had to pace myself.

More than one approach is needed, the classic good cop, bad cop routine, "if you don't talk to me, you will have my less than friendly colleague to deal with."

I am willing for the moment to suppose that some of the intended recipients might have inadvertently deleted the original appeal, or lost it in there spam filters.

I am also looking to target a wider range of researchers than those on the original list, as I come across them and there work in related fields. For instance at the Bionews event last week, where I was able to exchange a few views over a couple of pints of Guinness which is always a pleasurable way to do things.

Anyway one way to influence the research establishment is to become one of them, the Trojan Horse strategy as it were, from a time before Socrates was born.

jonathan said...
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oscilor said...

I wonder if it is worth going outside the autism field and writing to Prof Kay Davies of Oxford University. She was involved in discovering the gene for Duchenne’s Muscular Dystrophy, one of the first genetic conditions to yield to the then new techniques of molecular genetics.

In my late teens I had my first dealings with psychiatry and the gap between patient and doctor/nurse experience, but it made me want to study medicine.

The summer before going to university I was a volunteer helper in the Independent Living Scheme to a student, who had a single gene neuromuscular disorder and was told she would spend the rest of her life in an institution. The textbooks said she would die at the age of 2 or 3 years, but she lived into her late 30s and very much enjoyed life. She fought to avoid institutionalisation and to attend university herself, and I became very aware that the barriers she faced were not due to her condition, but to problems with wheelchair accessibility. She introduced me to the disability rights movement and social model of disability and we became good friends.

At university in 1987 I became aware that there was a massive revolution underway in molecular biology, thanks to new techniques in gene sequencing and identification.

I realised the ethical implications of this and wanted to understand the science, because i thought that is the only way the experts would take me seriously, so switched to study biochemistry and did a project in molecular genetics, which resulted in the discovery of two new genes.

One of the first conditions to be identified by the new techniques was Duchenne’s muscular dystrophy and I attended a talk by Kay Davies of Oxford University. This made me aware that even when we are dealing with a single gene disorder which has a clear relation to the disease, things are not at all that simple. The gene is extremely long and for this reason many people have mutations in it, but they can have mild or no symptoms, so simply identifying a mutation tells you very little. Also, because of its size, spontaneous mutations are common and can happen at many different sites in the gene, so a general screening programme is impractical, even if you wanted to eliminate the disease. At the time I wrote to her with further questions and she wrote a nice letter back to me.

I have just looked her up and see that she is still involved in research into muscular dystrophy.
http://www.anat.ox.ac.uk/groups/kedavies.htm

I have a feeling she may support screening for parents who already have a child with the disease, but her attitude is not to simply abort carriers of the gene, but to find ways to help. I believe she is a serious researcher and has thought about the ethical issues for a long time, as well as the genetics, and is not out for self publicity like certain autism researchers. She is also highly respected in the scientific community, and so it may be worth writing to her.

oscilor said...

I did later study neuroscience at the Institute of Psychiatry in London and my project was to take part in a screen for schizophrenia genes.

The whole field of psychiatric genetics is a mess. Results are announced that can’t be replicated, or which apply to very small groups who have syndromes that happen to include psychiatric symptoms. They come up with inventive reasons for why they can’t find the genes and try including mildy affected relatives or merging different psychiatric conditions, or using enormous sample numbers, but are getting nowhere, though they persist in the belief that the genes are there.

In my dissertation I wrote that it was possible that the category of schizophrenia had no biological validity and now I’m pretty sure of that. I think autism will turn out to be the same.

The best they can come up with is the woolly hypothesis that it involves combinations of genes, but they don’t know how to go about testing that. That certainly doesn’t stop people discriminating against parents of autistics, but it does mean that genetic based arguments for this are flawed.

Unfortunately, the psychiatric researchers are often medically trained doctors who do not have a good understanding of science or scientists with no experience of real patients of the reality of what makes the diagnoses disabling, so they will probably not support you. And neither lot understand statistics or mathematical modelling. But they do not have a very good reputation in the hierarchy of science either, due to the number of times they have cried wolf, so it might be better to get support from a more respectable scientist.

The author said...

Jonathon, I have just allowed your posts through, I do not propose to comment at any great length on them other than to point out that one root of my disputes with Michelle Dawson has been my criticisms of Mottron, et al. I tend to rather lump them in with school of Klin and Volkmar, but this is not the place to comment on what fault I may find with them from a scientific or epistemological perspective. I say even worse things about Paul Shattock's research, but I am glad to have him on my side so far as this campaign goes.

As for taking money from Autism Speaks, I am not agin it, could do with at bit of that myself :)

I'd just like to say that although Socrates comments are bit near to the knuckle, but they are more concerned with the ethics of the scientists in question than the quality of the research itself.

Anyway that is enough, do not bother to reply to this, I am moving on and drawing a line here.