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The draft legislation is a welcome attempt to ensure much needed safeguards, however, on a closer examination there are also some serious concerns with the detail, with particular regard to any potential 'knock on' or unseen effects. In any proposal whereby others are going to make decisions on someone's behalf, that proposal needs great care.
In the early consultations undertaken by the law society the idea of advocacy seemed to have been accepted so it was with great sadness that I could see no mention of advocacy in the final document. Furthermore, on telephoning the law society, I was told that advocacy had indeed been dropped because 'the legislation could not succeed or fail on the funding of a national advocacy scheme'.
These are not, however, my greatest concerns. Like the European legislation they are around issues of sterilisation, experimentation and research. With regard to sterilisation or, as the law commission puts it 'to render permanently infertile' such an operation can be carried out on the grounds of 'relieving the detrimental effects of menstruation'. As I understand it, to stop menstruation needs a hysterectomy, I know of many women with learning difficulties whom people have put into this category just because they have periods! I get a very different answer when I put the question 'what detrimental effects of menstruation would you have to have that were so bad you would have a sterilisation, let alone a hysterectomy?' The answers so far have all been that it would have to be pretty damn bad, usually a life-threatening condition.
The question would seem to be what safeguards are proposed? The draft suggests it may be undertaken on the signature of a doctor other than the one 'carrying it out'. Many disabled women have been sterilised and will continue to undergo such operations under these proposals, all because of the inconvenience of periods. If my understanding of the draft is correct it is seriously flawed. It legalises the current unsatisfactory situation rather than addressing the concern.
The second area is that of non-therapeutic procedures and particularly research procedures. This law will make it legal to conduct 'a procedure for the purposes of research notwithstanding that the research is unlikely to be of benefit to him'. Again safeguards and conditions have to be met. One is a certificate in writing by a registered medical practitioner not involved in the research stating 'his participation in the research is appropriate'.
Again it seems that a research procedure, totally unconnected with the person, can be carried out with just the signature of a second doctor if it is only a 'negligible risk'. I want to know what is negligible, when one in a hundred dies? One in a thousand?
A danger is a return to the use of using people with learning difficulties for research. It was commonplace not so very long ago in such research procedures as syphilis testing. A second concern is the hidden agenda of the new eugenics movement. It is already clear that pressure is to increase to irradicate Down Syndrome. It is listed in the Health of the Nation strategy as an avoidable cause of learning disability alongside smoking, rubella and alcohol excess. I am not sure the people with down syndrome would be so willing to give consent to research that would have meant they would not be alive if it had been in place earlier.
If there are decisions to be made about who is entitled to life they should be made in open debate, not behind the closed doors of professors or geneticists. More than ever I believe the availability of independent advocates are an essential safeguard in the process.
It is rumored that this bill will not now go before Parliament, in the next session, as had been planned. It is suggested that the Government does not want anything controversial on the agenda in the run up to an election. It could, however, be on the books quite quickly and we need to be in a position to challenge the concerns that are contained within it.
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