Abstract
BackgroundPublic health surveillance is not ethically neutral and yet, ethics guidance and training for surveillance programmes is sparse. Development of ethics guidance should be based on comprehensive and transparently derived overviews of ethical issues and arguments. However, existing overviews on surveillance ethics are limited in scope and in how transparently they derived their results. Our objective was accordingly to provide an overview of ethical issues in public health surveillance; in addition, to list the arguments put forward with regards to arguably the most contested issue in surveillance, that is whether to obtain informed consent.MethodsEthical issues were defined based on principlism. We assumed an ethical issue to arise in surveillance when a relevant normative principle is not adequately considered or two principles come into conflict. We searched Pubmed and Google Books for relevant publications. We analysed and synthesized the data using qualitative content analysis.ResultsOur search strategy retrieved 525 references of which 83 were included in the analysis. We identified 86 distinct ethical issues arising in the different phases of the surveillance life-cycle. We further identified 20 distinct conditions that make it more or less justifiable to forego informed consent procedures.ConclusionsThis is the first systematic qualitative review of ethical issues in public health surveillance resulting in a comprehensive ethics matrix that can inform guidelines, reports, strategy papers, and educational material and raise awareness among practitioners.
Highlights
Public health surveillance is not ethically neutral and yet, ethics guidance and training for surveillance programmes is sparse
Most public health ethics frameworks are developed in this tradition and identify principles that are understood as prima facie binding and action-guiding [29]
One such framework – chosen by us because it was built on the experience with and integrated the principles elaborated in previously published frameworks – identifies five guiding principles: beneficence, non-maleficence, respect for autonomy, equity and efficiency [30]. With respect to those principles we assume that an ethical issue arises when (a) at least one of those principles is not adequately considered, which we referred to as risks2 or (b) two or more of these principles are in conflict
Summary
Public health surveillance is not ethically neutral and yet, ethics guidance and training for surveillance programmes is sparse. Our objective was to provide an overview of ethical issues in public health surveillance; in addition, to list the arguments put forward with regards to arguably the most contested issue in surveillance, that is whether to obtain informed consent. Other organizations define surveillance slightly differently, the goal of informing public health practice is an essential element of most definitions. It is important to note at the outset that public health surveillance involves considerable ethical challenges. Conditions: generally relate to the lack, or inappropriateness, of current guidance frameworks used for making (normative) judgements on surveillance systems. ISSUES RELATED TO CHOICE OF FRAMEWORK FOR CONDUCTING PUBLIC HEALTH SURVEILLANCE. Risk of misguided judgement due to lacking ethical framework. Risk of misguided judgement due to using inappropriate ethical framework. Risk of choosing framework for evidence generation that hinders production and use of relevant data. RISK OF NOT FULFILLING PRECONDITONS FOR SUCCESSFUL PUBLIC HEALTH SURVEILLANCE Lacking ethical framework for using online data sources Lacking ethical framework for how to treat data of the deceased
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