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....