The Cancer Registration Act (CRA; SR 818.33) is the legal basis for the registration of data on cancer. The law regulates how data is transmitted securely to the cancer registry, how the data must be stored, who may view the data, who may use the data and when the data must be deleted. In addition, all national and international data protection guidelines also apply to cancer registration.
Measures for the protection of personal data
- Data is stored in secured electronic systems in Switzerland. Personal data is kept separate from tumour data.
- All people who work with the data are subject to the duty of confidentiality.
- All data holders have their own data protection and security concepts.
- Other people and institutions – such as the workplace or the health insurance company – do not have access to the information.
- Information for the public is always prepared in such a way that no conclusions can be drawn about individual people.
Only data that is of concrete use is registered. The data is transmitted via encrypted systems (e.g., from the reporter to the cancer registries, from the cancer registries to the National Agency for Cancer Registration).
Statistical further processing of collected data
The National Agency for Cancer Registration (NACR) evaluates the data from the cancer registries according to scientific rules. It does not receive any identifying personal data such as exact dates of birth or names for this purpose. The Federal Statistical Office (FSO) also compiles statistics on the spreading of tumours. It is the only national body that is permitted to combine data from the cancer registries with data from other areas via the OASI number in order to gain new scientific knowledge. This is subject to strict regulations, however, and may only be done for statistical evaluations in the field of health and after prior consultation with the federal agencies concerned.
Strictly regulated use of data for research purposes
The cantonal cancer registries, the Childhood Cancer Registry, the National Agency for Cancer Registration (NACR) and the Federal Statistical Office (FSO) also forward data to third parties upon request for research projects – for example, at universities. This generally involves anonymised data. If special reasons exist, data may also contain information about the person. A prerequisite for this is the consent of the data subject or approval by an ethics committee.