Legislation is being adopted in many countries to prevent the storage and use of health-related information on named individuals. Reliable data from population-based cancer registries are necessary for research into cancer and for cancer control. In order to obtain such data information on individuals must be collected and analysed, in order to link multiple notifications of a disease in the same individual and to link exposures or possible risk factors with individuals.

Cancer registries operate within clearly defined rules of confidentiality which preclude any breach of civil liberties or untoward use of confidential information. The Association has fought to maintain the right of registries to collect data for the purposes of health-related research. It has provided a code on confidentiality to be used by registries which is available on request to the Secretariat.