Ethics of public health surveillance: new guidelines.

Abstract

On June 23, 2017, WHO issued the first international ethics guidelines on public health surveillance (appendix), 1 helping to fill a key gap in knowledge regarding this important practice. Surveillance constitutes the foundation of outbreak and epidemic responses, but it is important not only for infectious disease but also for understanding the global challenge of non-communicable diseases. Surveillance can help to create accountable institutions by providing information about health and its determinants and an evidentiary basis for establishing and evaluating public health policy. Surveillance will be central to the success of the Sustainable Development Goals 2 proposed by the UN. When the results of surveillance are shared with populations and policymakers in a timely and appropriate manner, they can serve as a tool for advocacy. Perhaps most crucially, surveillance contributes to reducing inequities; the needs of populations in which suffering occurs, particularly when this suffering is unfair, unjust, and preventable, cannot be addressed if these populations are not first made visible. Yet surveillance has sometimes been the subject of pitched battles. Because surveillance can involve practices such as name-based reporting, it can trigger profound concerns about intrusions on privacy, discrimination, and stigmatisation, particularly in the absence of public trust that names will be secured and not inadvertently disclosed, or that aggregate data will only be released in a sensitive manner. Just as often, however, the failure to undertake public health surveillance has generated political and ethical controversy because of concerns that " what does not get counted does not count. " Despite the existence of landmark international guidelines on the ethics of research, including epidemiological studies, and specific ethical guidelines for surveillance of specific diseases in specific countries, there has never been a comprehensive international ethics framework governing public health surveillance that considers risk factors, environmental conditions, infectious diseases, non-communicable diseases, outbreak situations, and national borders. WHO's International Guidelines on the Ethics of Public Health Surveillance have been developed by an international group of experts in surveillance, epidemiological research, bioethics, public health ethics, and human rights. The authors of these guidelines combine expertise in leading research institutions, representing major non-governmental organisations that either undertake surveillance or are involved with surveillance-related advocacy. Among others, experts from the US Centers for Disease Control and Prevention, the European Centre for Disease Prevention and Control, the Chinese Center for Disease Control and Prevention, and WHO provided vital technical support to ensure that the guidelines were reflective of the actual procedures used for and issues involved in data collection, analysis, and dissemination. The Global Network of WHO Collaborating Centres for Bioethics