Data Protection

Cantonal cancer registries have always observed and been concerned about the preservation of the confidentiality of the data on cancer patients entrusted to them. They all follow the guidelines published by international institutions such as the International Agency for Research on Cancer (IACR), and are revised in the light of the European Union directives.

The European Union Directive 95/46/EC of 1995 on the protection of individuals with regard to the processing of personal data covered all types of data transfer, including health data. Article 8 specifies certain exemptions from the requirement to have the patient’s consent for the use of identifiable data, namely when the data are

"required for the purposes of preventive medicine, medical diagnosis, the provision of care or treatment or the management of health-care services, and where those data are processed by a health professional subject under national law or rules established by national competent bodies to the obligation of professional secrecy or by another person also subject to an equivalent obligation of secrecy."


  • The eight principles of the Data Protection Act 1998 [1].

    1. Personal data shall be processed fairly and lawfully and, in particular, shall not be processed unless:
      - at least one of the conditions in Schedule 2 is met, and
      - in the case of sensitive personal data, at least one of the conditions in Schedule 3 is also met.
    2. Personal data shall be obtained for one or more specified and lawful purposes, and shall not be further processed in any manner incompatible with that purpose or those purposes.
    3. Personal data shall be adequate, relevant and not excessive in relation to the purposes for which they are processed.
    4. Personal data shall be accurate and, where necessary, kept up to date.
    5. Personal data processed for any purpose or purposes shall not be kept for longer than is necessary for that purpose or those purposes.
    6. Personal data shall be processed in accordance with the rights of data subjects under this Act.
    7. Appropriate technical and organizational measures shall be taken against unauthorized or unlawful processing of personal data and against accidental loss or destruction of, or damage to, personal data.
    8. Personal data shall not be transferred to a country or territory outside the European Economic Area, unless that country or territory ensures an adequate level of protection for the rights and freedoms of data subjects in relation to the processing of personal data.
  • The evolution of the population-based cancer registry

    “Cancer registries have always operated under relatively strict conditions of respect for the confidentiality of medical information, particularly with regard to the physical security of their data files and the release of information to third parties[2],[3]. Recent developments in the biological sciences have given rise to a growing range of ethical codes and guidelines, which propose ever more stringent regulation of the confidentiality of personal data, and the need for signed informed consent for its collection, storage and use. Although prompted by a concern for individual rights, this has often conflicted with social responsibilities, as reflected by disease notification and registration, including cancer. Peto et al.[4] have described the serious damage that the obstacles erected by recent legislation can cause to bona fide researchers, particularly epidemiologists, when they seek access to individual medical records. Cancer registration is not feasible when individual consent must be sought from cancer patients, and ironically, the first cancer registry (in Hamburg) was the first victim of an attempt to make this mandatory. A sustained campaign by epidemiologists and public-health specialists has resulted in derogations to the informed-consent principle for information collected for public-health-related purposes — for example, in the United States[5], Japan and the European Union[6]. The International Association of Cancer Registries (IACR) has published a set of guidelines for cancer registries based on these principles[7]. Nevertheless, the local authorities and committees that produce ethical guidelines (see, for example, the Council for International Organizations of Medical Sciences[8]) continue to apply principles such as those in the Declaration of Helsinki, requiring that ‘in any human research, every potential participant … must be informed of the right to participate or not in the investigation and to withdraw his or her consent at any moment.’ This, in effect, makes accurate disease notification and registration impossible.”

    Parkin DM. The evolution of the population-based cancer registry. Nat Rev Cancer. 2006 Aug; 6(8): 603-12. Revi

     

     

    [1] European Parliament. Protection of individuals with regard to the processing of personal data and on the free movement of such data. Directive 95/46/EC, 0031–0050.

    [2] IACR/IARC Working Group. Guidelines for confidentiality in population-based cancer registration. Eur J Cancer Prev. 14, 309–327 (2005).

    [3] Muir CS, Demaret E in Cancer Registration, Principles and Methods (eds. Jensen, OM et al.) No. 95, 199–207 (IARC, Lyon, 1991).

    [4] Peto J, Fletcher O, Gilham C. Data protection, informed consent, and research. BMJ 328, 1029–1030 (2004).

    [5] Centers for Disease Control. Privacy, Confidentiality, Security and Legislation: The Health Insurance Portability and Accountability Act. Centers for Disease Control [online], www.cdc.gov/nip/registry/privacy/hipaa1.htm(2006).

    [6] European Union. The protection of individuals with regard to processing of personal data and on the free movement of such data. Official Journal of the European Union, 281, 31–50 (1995).

    [7] IACR/IARC Working Group. Guidelines for confidentiality in population-based cancer registration. Eur J Cancer Prev. 14, 309–327 (2005).

    [8] Council for International Organizations of Medical Sciences (CIOMS). International Ethical Guidelines for Biomedical Research Involving Human Subjects (CIOMS, Geneva, 2002).