Letter from the General Medical Council
You are seeking evidence principally from bodies
which are already involved in maintaining, developing or using
databases. Clearly the GMC is not engaged in such work.
We have considerable interest, however, in the
issues raised in questions 3 and 4 of your call for evidence which
concern patients' privacy and rights to decide whether identifiable
information about them may be used, stored and disclosed.
We have recently published new guidance on confidentiality
(Confidentiality: Protecting and Providing Information, August
2000) which in the annexed paragraphs addresses some of these
difficult questions in relation to databases used for public health
surveillance (see paragraphs 22 to 27). You will see that we recognise
the contribution such databases make to the public health, but
we also believe that patients should be asked to give consent
to the use of personal, identifiable information about themselves.
We regard providing information and obtaining consent as essential
to relationships of trust between doctors and patients. Obtaining
consent is always important, but it will be vital in relation
to sensitive information, such as DNA profiles, that patients
are fully informed about the nature of the information about themselves
which is to be stored, the purposes for which it may be used,
and to whom it will be accessible, before being asked to consent
to the inclusion of data about themselves on a database.
I hope that this information about our guidance
is helpful to the Committee.
Head of Standards Section
6 October 2000