Summary of ethical concerns raised in the surveillance plans reviewed by the Comité d’éthique de santé publique between 2003 and 2012

In 2013, after 10 years of existence, the Comité d’éthique de santé publique [Public Health Ethics Committee] (CESP) felt compelled to review the experience that it had developed with regard to its specific mandate to provide ethical reviews of surveillance plans. This document summarizes all the ethical concerns identified by the Committee through the review of the different surveillance plans that were submitted to it between the time of its establishment and 2012. This summary of the opinions allows the Committee to cast a broader critical look on the ethical reflection surrounding the practice of ongoing surveillance of the population's health status and its determinants.

The ethical concerns outlined in the present summary essentially translate "field" knowledge, that is, they are drawn from the deliberative experience of the CESP through its review of surveillance plans that were submitted to it between 2003 and 2012. The critical examination of the Committee’s experience during the first ten years of its practice has highlighted the knowledge that it has developed, but has also enabled the identification of questions that remain, which represent as many opportunities to continue reflection with parties involved in public health surveillance.

The knowledge acquired through the CESP's experience is primarily reflected in the tool that its staff developed to support the analysis of surveillance plans (Désy, Filiatrault & Laporte, 2012). The Committee invites parties involved in surveillance to make use of this tool to support the development of a comprehensive vision of their surveillance plans. It could also assist in ensuring consistency and balance between the different elements of which they are composed. The choice of objects and indicators, for example, should enable the construction of a fair representation of a population's health, that is to say, of the different health problems and determinants associated with them. The Committee also stresses the meaning given to a plan, its purpose, its objectives, and, of course, its limits. These different elements will benefit from being explicit and comprehensible with a view to being shared with the different users of the information resulting from a surveillance plan. Lastly, the Committee considers the initiation of dialogue with these different categories of users as a sine qua non condition of the exercise of any surveillance so it can be useful to those it serves: not only is the consideration of users' needs (recipients of the information) necessary, particularly at the start of the process, but these users can also make a real contribution to the periodic evaluation of surveillance systems. Despite the real difficulties that this poses, the initiation of dialogue with the population, at least with the population sub-groups most concerned by the impacts of the surveillance, constitutes a challenge to be taken up by those in charge of surveillance.

We have observed natural convergences between the observations of the CESP and elements reported in the literature on ethics in surveillance, notably with regard to confidentiality and privacy. These elements are moreover being regulated by the legal frameworks of the Canadian provinces and most countries. The tool for identifying ethical concerns is also echoed in this literature, for example, with regard to the transparent and explicit nature of purposes, the concept of proportionality (balance between benefit and harm, fair representation of population groups), and the importance of consulting the target groups and the users of the information that will be produced.

In conclusion, the CESP invites parties involved in surveillance to remain critical with regard to their practice, to regularly question and test automatisms by keeping in mind the three themes that encompass the ethical concerns raised here to date: specificity, balance, and spaces for dialogue.

 

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978-2-550-75152-6

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