Recently the World Health Organization’s (WHO) Health Systems and Innovation Cluster released its WHO Guidelines on Ethical Issues in Public Health Surveillance. This report was the first attempt to develop a framework to guide public health surveillance systems on the conduct of surveillance and reporting in public health emergencies.
The guidelines are described as a ‘starting point for the searching, sustained discussions that public health surveillance demands’. In the public health context, surveillance – monitoring for disease outbreaks – must be done in a manner that assures the privacy and safety of the individuals concerned. Data collected on individuals must be secure and de-identified unless, as Guideline 11 indicates above, specific individual information is required to protect populations from infection. Safety is also a priority to ensure that those who are infected are not vulnerable to attack or discrimination based on their illness. Privacy and safety, however, depend upon more than just the ethical practice of surveillance; it relies upon the social and political environments in which surveillance occurs—in particular, upon good governance and respect for human rights. As the Guidelines state, one of the ‘backbones’ of an ethical surveillance framework is ‘good governance’.
In many countries these conditions of good governance are not met either because individual rights cannot be protected or because government is not open to public scrutiny, or – as is often the case – both.
When good governance is missing, individuals and health practitioners who identify and want to report disease outbreaks can be put at risk by their government’s attempts to keep the extent of the outbreak concealed. This, in turn, only heightens the dangers confronting the wider population. Recently, I examined the extent to which international law on infectious disease control and response, the WHO International Health Regulations (2005); and the organization responsible for this instrument, the World Health Organization; establish a right to report disease outbreak events.
Since 2007, the year the International Health Regulations (IHR) came into force, states have been expected to meet eight IHR core capacity requirements to contain public health threats (broadly defined) under the new framework. These core capacity requirements include: 1) national legislation, 2) policy and financing, 3) coordination and National Focal Point (NFP) communications, 4) surveillance and response, 5) preparedness, 6) risk communication, 7) human resources and 8) laboratories. One significant inclusion in the adopted IHR was that states agreed to develop detection and response capacities, including the post of an IHR National Focal Point, who would be available 24/7 in every country to communicate outbreak events with WHO. In the revised IHR, the WHO was also given the right to receive reports of disease outbreak events from sources other than the affected state. The Article concluded: ‘only where it is duly justified may WHO maintain the confidentiality of the source’.
The WHO struggles to balance supporting a state in its conduct of public health surveillance and risk communication against supporting non-state actors’ right to report relevant and necessary outbreak information.
During my research I examined two situations: the outbreak of Middle East Respiratory Syndrome in Saudi Arabia in 2012, and the outbreak of Ebola in Guinea in late 2013. These cases illustrate the mistrust that accompanies public health surveillance when states have a record of civil rights abuses. I found that there are many harms that come to individuals who report against the wishes of the state (including loss of employment, deportation, threat of imprisonment, and imprisonment) and the populations who often mistrust the information they are receiving from the government due to past oppressions and abuses. The WHO struggles to balance supporting a state in its conduct of public health surveillance and risk communication against supporting non-state actors’ right to report relevant and necessary outbreak information.
One way of addressing this impasse is by focusing more on the human rights implications of outbreak surveillance, response, and reporting. Advocating the right to report, as conceptualised under the revised IHR, requires a corresponding right for non-state actors to issue reports directly to the WHO. Under Article 9, the WHO has the right to receive reports from non-state actors, and the IHR instrument itself is grounded in an understanding of protecting human rights of individuals (Article 3). In cooperation with global disease surveillance platforms and the Group of Eight Global Health Security Initiative, more attention should be devoted to the accountability, transparency, and human rights provisions embedded within the IHR. Specifically, a framework that supports the rights and responsibilities of individuals and non-government actors to report outbreak events should be mooted. This has the potential to remedy not only the protection gap for those who feel professionally compelled to notify WHO under Article 9, but it may serve to allay the public mistrust and in turn, enhance the capability of public health surveillance.
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