DRAFT MENTAL INCAPACITY BILL
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
Dr Donald Lyons
Medical Adviser for Elderly Services