Select Committee on Science and Technology Written Evidence

Letter from the Imperial Cancer Research Fund

  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
Medical Director

11 October 2000

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