Letter from the Imperial Cancer Research
The ICRF is soon to launch a study collecting
data about individuals at risk of developing familial cancer.
Clinical units within ICRF contain various collections of tissue
samples taken from cancer patients.
In the familial cancer study, information will
be obtained as a vital resource for research into the inherited
basis of cancer susceptibility. Storing of DNA from affected individuals
who give informed consent will be used for the molecular testing
for inherited cancer susceptibility genes.
The British Familial Cancer Record, described
above, is being funded by the National Lottery and the ICRF. The
lottery funds run out after three years and there will be a need
to look elsewhere for the continuation of funding of the British
Familial Cancer Record.
Research Ethics Committee approval has been
obtained for the study. Individual consent will need to be obtained.
Future research projects will require ethical approval. There
will be a need for implementing the planned very stringent controls
over the security of information stored on families in all genetics
departments which are taking part in the study.
Information being collected relates to family
histories, follow up of health status, screening results and molecular
data about genetic tests done in the clinical setting. There will
be a central database containing pooled data from seven different
ICRF family cancer clinics. The data will be non-attributable.
The research samples will only be tested when they have been made
non-attributable and identifiable only by a code number.
The ICRF sees its responsibilities regarding
privacy, consent to present and future use of information and
tissue samples and public accountability to be extremely high.
It also believes that it is important to recognise that constraints
on the use of the information must not be so stringent as to prevent
the implementation of research into the inherited basis of cancer
susceptibility if progress is to be made.
The ICRF sees its activities in the area of
genetic databases growing in the future with advances in technologies
and knowledge for seeking low penetrants genes in the common cancers,
such as colorectal cancer.
Dr John Toy
11 October 2000