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We are committed to ensuring that people who lack mental capacity should not be denied the benefits that can be obtained through carefully regulated research. We have spoken at length this afternoon about the importance of safeguards and the need for them to be as strong as possible. Clause 31(5)(b) is very clear—the research must not interfere with the person's freedom or privacy in a significant way.
The Joint Committee on Human Rights has been considering the matter and we value its views. We have explained the meaning of "significant way" in this context. It welcomed the clarification of the drafting and in particular our intention that any interference with a person's privacy or freedom of action should be kept to a minimum. The committee goes on to say that in its opinion it would be clearer to substitute "material" for significant, so that the protection requires that anything done to, or in relation to, the person who lacks capacity will not interfere with their freedom of action or privacy in a material way. This is something we are looking at with interest.
Although we have not come to quite the same conclusion as the research community, we are looking at the terms, as I say. Therefore, emboldened by the expert views of the Joint Committee, I am bound to say that we do not think the amendment proposed achieves what we and the Joint Committee want. Having looked at this carefully, we feel that changing this to use the word "unduly" would weaken the protections, which I know is not the noble Earl's intention. It would imply that any interference would not be undue—that is, would not be justifiable in view of the aim of the researchers. We have set the test at a low level; that is to say, interference must be kept to a minimum. The noble Earl's amendment would change that. We need to think carefully about that word.
To give an idea of the context in which we are arguing, let us consider an example that has been used in another place of a researcher who may want to observe how a person with learning disabilities solves an abstract puzzle. He or she may need to do so in a way that means the person is not distracted by the presence of the researcher. To achieve that a two-way mirror may be used. That might be said to be a minimal interference with the person's right to privacy. But suppose the researcher wanted to study the sexual behaviour of the person with a learning disability or how that person bathed or undressed. We believe that filming those intimate moments does not constitute minimal interference but rather a gross intrusion. Many people would hold that view. We need to be careful not to accept a provision which might allow a well intentioned researcher to argue to a research ethics committee that this was not an undue interference—the matter turns on the notion of what is undue—because the aims of the research were vitally important.
I hope that with that clarification and bearing in mind what I said about the word "material", the noble Earl will withdraw his amendment.