Cancer Surveillance Systems
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Office of the Privacy Commissioner of Canada to the NCIC Workshop
November 17, 1996
(Check Against Delivery)
Increasing the level of surveillance relating to cancer will inevitably raise important privacy issues. Any increase in the collection, use or disclosure of personal information, particularly sensitive medical information, raises privacy issues.
Canada's privacy laws, more correctly called "data protection" laws, do not necessarily inhibit research. These laws restrict the collection, use and disclosure of personal information by government institutions. Most important for cancer researchers, the laws limit the circumstances under which the personal information held by government institutions can be disclosed. Among the most important exceptions to this limitation are provisions in all data protection legislation allowing the disclosure of personal information for research purposes.
However, researchers must be aware of the growing concern of Canadians about loss of privacy in many areas of their lives. Because they are increasingly coming under surveillance by governments and employers, individuals are becoming more concerned about the many privacy intrusions in their lives. Even valuable forms of surveillance, such as some forms of medical surveillance may face opposition as a result. Wherever it does not make it impossible or difficult to conduct research, researchers should use data that cannot be linked to an identifiable individual.
If personal information is integral to the research program, researchers must assess the value of the research program to determine whether the collection of personal information is justified. If the program can be justified, researchers may still need to sell the need for expanded levels of surveillance relating to cancer. They may also need to accept the right of individuals to be selfish and to refuse to participate in research.
To minimize the privacy intrusions inherent in research researchers should to the extent possible attempt to obtain the fully informed consent of individuals to participate in research. Where this cannot be done, or where the research cannot be meaningful without information about all individuals covered in the study, researchers should try to ensure the following:
- that the number of researchers who can have access to personal identifiers is strictly limited.
- that adequate security measures are taken to prevent to the extent possible the release of that information to unauthorized persons. Measures to achieve this could include encryption of identifiers, audit trails to identify those who obtain access to personal information, passwords and computer firewalls.
- that negligent or deliberate disclosure of personal information outside the research context result in discipline, including possible legal sanctions.
- that uses of the information beyond cancer surveillance be prohibited, through strong statements in legislation and through the agreement of researchers to oppose all secondary uses of such information. Even if the collection and use of personal information for cancer research can be justified, the danger remains that research databases containing sensitive medical information will be co-opted by governments or private sector organizations, and that such co-opted information will be used to cause harm to the individuals to whom it relates (for example, the sharing of personal medical information with the police for questionable purposes, or the disclosure of such information to insurers or employers). Thus, personal information that has been collected for a valid public purpose can be misused to the detriment of the public.
Preventing such secondary uses of personal information is a critically important issue for those engaged in aspect of surveillance. Researchers must not "wash their hands"of responsibility for potential improper uses of personal information collected and used for cancer research.
- recognize that future governments may remove restrictions on the secondary uses of sensitive medical information, to the harm of the individuals to whom the information relates.
Researchers interested in cancer control also have an interest in promoting respect for medical confidentiality in other contexts. Individuals who fear the disclosure of sensitive medical information to employers or insurers may be reluctant to early medical help that could facilitate treatment.
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