I, too, thank the Minister for his clear explanation of these interim regulations and we on these Benches are broadly happy with this sensible set of what are almost tidying-up transitional regulations. However, like the noble Earl, Lord Howe, I have a few questions and doubts, which I will go through as quickly as possible because I know that we are running late. First, given that we have had to look at this without the code of practice, it would be good to know when the code of practice for the Mental Capacity Act 2005 will be laid before Parliament, especially the research guidance. The Minister in another place said that it would be before 1 October 2007, but it would be good to have a little more clarity. It would also be good to see it a little sooner than that.
Secondly, there are real questions around the nominated person. Schedule 2(6) says that the nominated person, "““must ensure that nothing is done in relation to [the person or subject] in the course of the research which would be contrary to … an advance decision of his which has effect, or … any other form of statement made by him and not subsequently withdrawn””,"
which I think addresses part of the question asked by the noble Earl, Lord Howe. Tim Loughton in another place rightly asked what culpability attaches to the nominated person if those considerations are breached unwittingly. It is very complicated because it is really unclear who can act as a nominated person.
Schedule 2(1), the relevant section, reads that the researcher, "““must take reasonable steps to identify a person who … otherwise than in a professional capacity or for remuneration, is engaged in caring for P or is interested in P’s welfare, and … is prepared to be consulted [by the researcher] under this Schedule””."
It is unclear, because how close a caring connection or how well the nominated person knows the person is not specified at all. Section 2 allows the researcher to nominate someone who is prepared to be consulted by the researcher under this schedule and has no connection with the project, but that could, as stated, be more or less anyone.
We all share the Government’s view that research already ongoing to which the patient has consented hitherto should not be unnecessarily stopped or interfered with. Many of us also agree that the interests of the patient must be assumed to outweigh those of science and society. But if we are talking about the loss of capacity, people change.
The work of Jennifer Radden, the distinguished American philosopher at the University of Massachusetts, teaches us to ask what kind of person someone who has lost capacity becomes. Most of us find it difficult to imagine that we might become very different if, for instance, we suffered from Alzheimer’s. We might be quite content—as we certainly would not be now—to say ““Good Morning”” to the cat 1,000 times a day. For that reason, it is important that the nominated person has real knowledge of the person concerned and, ideally, was nominated by them before capacity was lost so that they have real knowledge of how they felt.
The question of the professional consultees in paragraph 2 of Schedule 2 remains an issue, as respondents to the consultation suggested. It would be good to hear when the Government will issue their statutory guidance on professional consultees, given that the Explanatory Memorandum tells us only that it will be ““at a later stage””.
Questions about who a nominated person or a relative might be were asked during discussions on the Mental Health Bill. Members on these Benches would have grave reservations if the patient who temporarily lacked capacity was not allowed to nominate, within reason, someone other than their nearest relative. In the case that we are discussing, where loss of capacity is permanent, although the consequences are obviously much less serious, the nominated person is appointed much more casually. I hope that the Minister will reflect on why the contrast between the Government’s two positions is so great.
My honourable friend in another place, John Pugh, asked about an audit of the research. I realise that this is a relatively short-term transitional set of regulations for research that starts before October 2007 and is consented to before March 2008, but some of these research projects, such as Sir Michael Marmot’s long-term Whitehall civil servants studies, or studies following groups of children from birth, are very long. People who lack capacity can change. Where is the audit of the views of their carers in these long-term studies?
Taking those questions and caveats into account, however, I am broadly content with these regulations.
Mental Capacity Act 2005 (Loss of Capacity during Research Project) (England) Regulations 2007
Proceeding contribution from
Baroness Neuberger
(Liberal Democrat)
in the House of Lords on Wednesday, 21 February 2007.
It occurred during Debates on delegated legislation on Mental Capacity Act 2005 (Loss of Capacity during Research Project) (England) Regulations 2007.
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