draft of questionnaire
Security of Samples and Associated Information
a) Chris Busby tabled a paper on this topic, but as members had not had an
opportunity to read it in advance of the meeting, they were asked to consider
it out of committee and send any comments to the Secretariat. There was a
discussion over whether the samples needed to be anonymised and, if so, how
this should be done. Chris Busby said that, in his view, which reflected that
of several veterans, pseudonymised copies of the results for each individual
should be passed to a third party. There was much discussion over who this
should be; it was agreed that both MOD and veterans’ groups needed to be
happy with the repository. Ron Brown suggested that information could be
copied to the veteran and to a repository such as a solicitor.
Action 6.8. Members to send comments on Busby “Security” paper to
b) There was a further discussion over what information the co-ordinating centre
would need apart from the name of the veteran, the serial number and the
result. The Chairman pointed out that they would need to see the whole
questionnaire in order to formulate the correct advice for the veteran.
c) Some concern was expressed about the possible introduction of errors in
transcribing information into a database. David Lewis suggested building in
an audit process, for example by checking 10% of entries.
d) David Lewis said that the security and chain of custody of the sample itself
needed to be considered. Both MOD and the veterans would need to be
satisfied that it had not been tampered with.
Information to GPs
a) Covered at 4 g).
Information to Subjects
a) The Chairman stated that feedback to veterans should preferably be provided
by a doctor with expertise in radiation medicine and toxicology. The person
providing feedback would need to explain the significance of the result for the
veteran. This should be part of the contract with the health provider who was
going to co-ordinate the collection of samples and reporting of results.
b) Brian Spratt expressed concern as to how the significance of the result would
be explained, particularly because there was not a consensus view. He suggested
that the expert would need to explain that some people thought the result might
mean one thing, some another. Chris Busby and Malcolm Hooper felt it would be
acceptable to say that there were different interpretations of the result, whereas
Ron Brown felt this would be unsatisfactory and he personally would like an
unambiguous explanation. Ivor Connolly said that he believed most ill Gulf
veterans thought there was a “cocktail” of reasons for their illness. He stressed
that this issue must be resolved so that the programme could proceed. Brian
Spratt suggested that a table could be produced giving risks by level of exposure
c) The Secretary was actioned to provide a Statement of Requirement for the
health service provider. This should include a requirement to state what expertise
would be provided to communicate test results to veterans.
Action 6.9. Secretary to provide Statement of Requirement for Health