Joint Committee on the Draft Mental Incapacity Bill Memoranda



Issues on Medical Research

This is a brief addendum to a report I previously submitted on the Draft Mental Incapacity Bill.

The Bill has no provision for research on people on incapacity. The ethical situation as regards research where people cannot give consent is unclear and could be helpfully clarified by legislation under this Bill. In Scotland, the Adults with Incapacity (Scotland) Act 2000 permits research under the following circumstances:-

The research must be into the incapacity (causes, care, treatment, etc)

The research must be of real and direct benefit to the adult. If it is not of real and direct benefit to the adult, it must be likely to benefit others with the same incapacity through greater scientific understanding of the condition.

The research project must be one that cannot be performed using people who are capable of consenting.

There must be no or minimal foreseeable risk or discomfort from the research.

Consent will be obtained from a Welfare Guardian or Attorney with authority to consent. Failing that, consent is obtained from the nearest relative.

The issue of consent has thrown up some issues in Scotland. For instance, a person with learning disability may not have a nearest relative available to give consent. Also, if a researcher wishes to study issues of abuse, it may be that the nearest relative is the alleged abuser and would be an inappropriate person to give consent. Under such circumstance, we have proposed that a person acting in an advocacy capacity with no interest in the research should be able to give consent on behalf of the adult. We do not as yet know whether the Scottish Executive will take this suggestion up.

I hope this is a helpful addendum to my previous submission.

Dr Donald Lyons

Medical Adviser for Elderly Services

previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries index

© Parliamentary copyright 2003
Prepared 12 September 2003