Data protection and privacy
Compliance with data privacy provisions is a top priority
The flow of patient data from doctors, clinics, pathology centers and laboratories to the registry is inextricably linked to maintenance of a cancer registry. The Federal Commission for professional confidentiality in medical research granted the canton of Zurich 1995 for the first time authorization to collect data on persons with cancer and who reside in the cantons of Zurich or Zug (Zug since 2011), or who have been treated there. In this context, all doctors in hospitals and practices are allowed to transmit non-anonymized data to the cancer registry of the cantons of Zurich and Zug without violation of professional confidentiality regulations. With the introduction of the Human Research Act, as of 2014 cancer registries are required to apply for a new registry authorization. With a 'multi-center' approach, a joint application was formulated in summer 2014 under the auspices of the National Institute of Cancer Epidemiology and Registration (NICER). In August 2015, the cantonal Ethics Commission Zurich granted authorization for the transitional phase until the possible passage of a national cancer registry law (Authorization for the transitional phase). As per 1.1.2017 the cantonal cancer registry law which regulates the handling of patient data and data protection is in effect for the canton of Zurich,
According to the cancer registry law, the attending physician or hospital must notify patients about the obligation of data transfer to the cantonal cancer registry and that they have the right to veto the transfer of their data to the cantonal registry. An information sheet (hier den Link zum züricher leaflet) drafted by the cancer registry and the department of health (Information for Zurich Patients) explains the law and the rights of the patient. For patients of Zug, the regulation is explained in a leaflet.