Joint Ethico-Medical Committee
Catholic Union of
Guild of Catholic Doctors
To: Dame Fiona Caldicott,
Working Party Mental Disorders and Genetics,
Nuffield Council on Bioethics,
28 Bedford Square,
7th December 1998
Dear Dame Fiona,
Thank you for the copy of the paper Mental Disorders and Genetics: The Ethical Context which I have now been able to read carefully.
I realise that there is no obvious forum for comments but I wonder if I might, as Chairman of this Committee at the time we made our submission, make a few short points while the matter is still fresh in my mind.
I find the comment in the document at 7.14 very regrettable, indeed possibly offensive, where it says We think that the more restrictive view is likely to reflect a need for wider and more considered education beyond the immediate disciplines concerned. Although we ourselves took a carefully nuanced position, allowing permission to be presumed on behalf of those who had at one time been capable of giving it, the working party seem to imply that those who hold that all (such) people incapable of complex decisions should be protected from non-therapeutic research have failed to understand the implications of this view. I am sure this is not the case, and there was certainly much debate in our own Committee on this point. I believe they all understand only too well that it means that research on these conditions would be seriously impeded or impossible but nevertheless consider the ethical arguments to overrule any practical drawbacks.
I find it worrying, in spite of the careful reasoning in the preceding sections (including 5.38) and your view that genetic testing should not be tied to a willingness to undergo abortion, that you query the appropriateness of non-directional counselling (5.44). I am entirely in agreement with the importance of enabling individuals to make their own informed decisions at each stage of the process' but wonder what, if genetic counselling is not to be non-directional, it is to be?
Lastly I would question the assumption (5.53, (5.48)) that the presence of parental choice stops a genetic programme from being eugenic. It would seem very possible that societal and peer pressure could easily lead parents to conform with a eugenic programme even where choice was ostensibly free.
Dr Ian Jessiman
Joint Ethico-Medical Committee of the Catholic
Union of Great Britain and the Guild of Catholic Doctors