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In Amendment No. 109 I approach this issue from a rather different angle from that of my noble friend in the last set of amendments because I do accept that there are circumstances when it is ethically justifiable to carry out research on someone who is mentally incapacitated, even though there is no prospect that the research will benefit them directly. I must make my apologies to my noble friend for taking a different view.
It is a principle recognised in the European convention. I believe that that is quite right because without such research we would not be able to advance our knowledge of possible treatments for genetic disorders, to take but one example. A whole host of compelling examples could be cited in this category of research, such as the possible link between Down's syndrome and pre-senile dementia, research into the right amount of anaesthetic for patients who have suffered a bleed on the brain, and research into dementia and variant CJD. So, with great respect to my noble friend, I do not think that we can or should prohibit this type of research, provided that it is carried out only under very strict conditions.
However, like the noble Lord, Lord Alton, what concerns me is that paragraph (b) is worded too loosely. The key requirement in the European convention is that this type of research should be "exceptional". It should,
"have the aim of contributing, through significant improvement in the scientific understanding of the individual's condition . . . to results capable of conferring benefit to the person concerned or other persons . . . afflicted with the same . . . condition".
I have abbreviated the quotation.
Where in this clause of the Bill is the word "exceptional"? Where is there a mention of the words "significant improvement in scientific understanding"? The words are not there. The clause simply refers to,
"knowledge of the causes or treatment of, or of the care of persons affected by, the same or a similar condition".
That seems to be a much, much weaker formulation. I have to ask the Government why that is. Adding to the sum of general knowledge is not the same as contributing a significant understanding where the circumstances are exceptional. We need much more convincing answers from the Government than the ones they furnished on these issues to the Joint Committee on Human Rights.