12 December 2013
Our reference: FOIRQ1830
Dear Ms McNeil
Please find below the information you requested under the Freedom of Information
Act.
1. Was the parent/carers consent obtained for the brain scans?
Yes; the parents/carers consent for the MRI brain scan was obtained as part of the
overall consent for the child to participate in the study. Details of all of the
assessments, including the MRI brain scan, were included in the information sheet
provided to parents. Where it was not possible to contact the child’s parent/carer, the
child’s keyworker from the Kids Company signed the consent form.
The project had full ethics approval.
2. What is the process for obtaining the child and parent/carers consent?
Participants who met the inclusion criteria for the study were identified by the Kids
Company. Information sheets were sent to these prospective participants, their
parents/carers and the relevant Kids Company keyworker. Participants,
parents/carers and keyworkers were invited to contact the research team if they had
any questions, and formal consent was obtained when the participants visited
ICH/GOSH for their first appointment.
3. Please could you send a copy of a sample consent form.
Copies of the consent form and information sheets are attached.
4. What is the definition used of antisocial behaviour and adolescent for this
research?
Kids Company selected the participants, and made an assessment as to whether or
not their behaviour qualified as anti-social. This assessment was based on the DSM-
IV diagnostic criteria for anti-social behaviour, the participants score on the Conduct
Disorder Scale, as well as other behavioural questionnaires. The GOSH/ICH research
team was not involved in this process.
5. When is the first report due to be published from this research?
A report of preliminary findings was submitted to the Kids Company in 2010. There
are no plans to publish as the data did not confirm the hypothesis. This study was a
pilot project to assess the feasibility of a larger study and following our findings, we
decided not to pursue the study further.
The Trust is withholding the name and contact details of the Unit Administrator
mentioned in the Information sheets (to carer/parents and participants) under s40(2)
of the Act.
The Trust considers that the exemption is engaged because disclosure would be a
breach of the First Data Protection Principle, namely that personal information should
be processed fairly and lawfully. The reason for this is because the administrator has
refused consent for their details to be disclosed. Therefore, the Trust has considered
whether the disclosure would be fair. This person holds a junior role in an
organisation which is not the Trust (and therefore has no influence and accountability
for Trust actions and/or finances) and disclosure of this information without their
consent could cause distress. On balance the Trust considers that public interest in
disclosing their names is outweighed by their right to privacy and therefore the
disclosure of their names would not be fair.
Please note: The research team mentioned in these documents has refused consent
for their details to be used for direct marketing.
The Privacy and Electronic Communications Regulations states that a person has to
give consent for their details to be used for direct marketing purposes (including calls
and/or emails) or it would be a breach of the Data Protection principle of fair
processing of personal information.
I trust that the information provided is sufficient and helps to answer any concerns,
questions or issues you may have.
If you should have any further queries related to this request, please do not hesitate
to contact me. Please ensure that the above reference number is quoted on any
correspondence.
The information provided is
Trust copyright. You may re-use this Great Ormond
Street Hospital for Children NHS Foundation Trust copyright information in
accordance with the Open Government Licence:
http://www.nationalarchives.gov.uk/doc/open-government-licence/version/2/
Yours sincerely
Maria Björklund
FOI Co-ordinator
Email xxxxxxx@xxxx.xxx.xx
[enclosed – Your rights – see next page]
Your rights
If you are not satisfied with the response to your request for information, please do
not hesitate to contact the member of the FOI team whose name appears on the
response letter. Please quote your reference number on any correspondence.
You can also write to the Assistant Head of Quality, Safety and Transformation – Risk
Management at the following address:
Quality, Safety and Transformation team
Great Ormond Street Hospital
LONDON
WC1N 3JH
If you are still not satisfied with your response, you also have the right to appeal to the
Information Commissioner.
You can contact the Information Commissioner’s Office at the following address:
Information Commissioner's Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
