Role of consultee information sheet v1 06/03/13
A study about how parts of the brain work in
people with Down Syndrome
As someone who knows __________________________ (person’s name)
well/in an independent capacity, you are being invited to consider whether
_____________ (person’s name) would want to participate in the research
study based on your knowledge of him/her.
Please could you read this information sheet which outlines the provisions for people
who lack capacity to consent to participate in research and the role of the consultee.
The role of a consultee
The role of the consultee is to advise the research team as to the individual’s likely
wishes/feelings with regard to taking part in the study. The consultee is not being
asked to consent on the individual’s behalf, but rather to give advice about their
wishes. However, the consultee's opinion will be respected in making a decision as
to whether the individual should enter the study or not.
If you are prepared to act as the consultee you will be provided with a copy of the
participant information sheet and be given an opportunity to discuss the project with
one of the researchers so that you can form an opinion as to the individual’s likely
wishes/feelings in respect to the project. If, at the end of this process, you feel that
the individual would like to take part in the project you will be asked to sign a form to
that effect.
Capacity to give consent
Usually an adult must give their informed consent before they can be entered into a
research study. However, many adults with a learning disability lack the mental
capacity to make such a decision. This does not mean that adults who lack capacity
must be excluded from taking part in research, but does mean that certain processes
- designed to protect both the person lacking capacity and the person making the
decision for them - must be followed.
Firstly, it cannot be assumed that an adult with a learning disability lacks capacity to
make such a decision. If there is a suspicion that the person lacks capacity, the two
stage test of capacity must be applied as set out in the Mental Capacity Act 2005. If,
after assessment, the person is deemed not to have the capacity to consent to being
entered into the study, then the researcher must appoint a consultee.
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Role of consultee information sheet v1 06/03/13
Consultees: definition
A consultee can either be personal or nominated. A personal consultee is
someone unconnected with the research who knows the potential research
participant in a personal capacity and is able to advise on the person’s wishes or
feelings. This could be a friend, family member or court appointee.
A nominated consultee is someone unconnected with the research appointed by
the research team to advise the researcher about the person’s wishes or feelings in
relation to the project. This could be another professional but they must not have any
connection with the study.
The research team has taken reasonable steps to identify a personal consultee in
the first instance.
Please contact me if you have any questions.
Thank you for taking the time to read this letter
Details of contact person
Name:
Carla Startin
Address:
Department of Mental Health Sciences,
University College London,
Room 109 Charles Bell House,
67-73 Riding House Street,
London
W1W 7EJ
E-mail address:
downsyndrome@ucl.ac.uk
Telephone:
020 7679 9314
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