Only a few days to go: We’re raising £25,000 to keep TheyWorkForYou running and make sure people across the UK can hold their elected representatives to account.Donate to our crowdfunder
I should like to support the noble Earl's Amendment No. 101, to which my name is attached. I support it for all the reasons that he has so eloquently set out. The question here is whether the words "unlawful unless" in relation to research are paramount and conflict with the later Clauses 31 and 32, which outline the formal steps researchers have to go through before doing a study. As the noble Earl has suggested, might it not be simpler if the words "lawful if such and such were in place" were substituted? I hope that my noble friend the Minister will take that on board.
The principle behind Amendment No. 100 has my full sympathy. I support the amendment, though I am not absolutely convinced about the need for it. If we inserted the words "physical" and "social", I would wonder why we have not included the word "psychological", because psychological research also can be intrusive. It may indeed be the case that we need to introduce too many qualifying terms. Might it not be better to think of intrusive research as meaning any type of research? That might be enough. I just wonder about that.
I should also like to comment on Amendment No. 102, tabled by noble the Baroness, Lady Finlay, in her absence. I think that this is an important amendment and would allow certain types of research not to be lost. If the Committee will forgive me, I can use here the example which I gave in an earlier amendment of the human biobank study in which half a million people are being asked whether they will volunteer to take part in a long-term research project over 10 to 30 years, in which time they will be followed very closely. If, as seems inevitable, some of the 500,000 people become incapacitated at some time, it would be a problem if the data collected on them—the accumulated data available—could not continue to be used in the research. This amendment seeks simply to ensure that the data for which consent had been obtained can continue to be used as the patient loses capacity. I support this amendment.