Saturday, 13 March 2010

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.

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