Public health surveillance is a powerful tool for fighting disease outbreaks and identifying various other health risks. Without knowing some basics, such as who has a disease and where are they located, it becomes nearly impossible to intervene. However, public health surveillance often raises concerns about privacy and civil liberties. Health officials, for instance, might have to contact individuals with disease. Interventions might involve measures like isolation or mandatory treatment. Although such interventions might be necessary, even the appropriate release of aggregate data can create fears of stigmatization. Without comprehensive ethical guidelines, these controversies can hinder the quality of public health surveillance.
The World Health Organization’s (WHO) Global Health Ethics unit has released new ethical guidelines for public health surveillance highlighted in The Lancet. Amy Fairchild, PhD, MPH, associate dean of academic affairs at the Texas A&M School of Public Health and professor in the Department of Health Policy and Management, played a lead role in guiding a committee of international experts to produce the WHO Guidelines on Ethical Issues in Public Health Surveillance.
“There are, of course, international guidelines for research ethics going back to the landmark Nuremberg Code,” said Fairchild, lead co-chair of the guidelines development committee. “But public health surveillance is not human subjects research and cannot be held to norms such as informed consent or opt-out. Some nations and international agencies had developed security standards for surveillance data or guidelines for diseases like HIV or tuberculosis, but there was nothing that cut across both disease boundaries—infectious diseases, non-communicable diseases, occupational and environmental exposures—and national boundaries.”
Public health surveillance began in the mid- to late-19th century in the United States and in European countries. It began with simple paper records that recorded names, addresses and, in some cases, basic clinical and social information such as weekly wages of a family or the cleanliness of a household. Although this rudimentary system has been modernized, it is still key to identifying disease outbreaks and guiding responses to epidemics. It is central to mapping patterns of morbidity and mortality and helping to ensure healthy environments.
But such surveillance has been at the heart of sometimes bitter controversy. Parent groups, for example, have resisted the collection of data about immunizations, concerned that it might be a tool for mandatory vaccination. In the early years of the AIDS epidemic, gay men in major American cities vigorously challenged calls for name-based HIV reporting. It was a social context in which talk of tattooing and quarantine was in the air.
More often than resisting surveillance, though, populations have demanded a “right to be counted.” For example, in the early 1990s, Texas residents in the cities of Brownsville, Harlingen and Houston advocated for birth defects surveillance after parents began to worry about potential clusters of anencephaly. A deep desire to protect children became central to a bipartisan effort to fund birth defects surveillance across the state.
“Safeguarding privacy and data is important for maintaining public trust, but so is community knowledge of surveillance and what it can offer,” Fairchild said. “This is where an international ethics framework is useful, but such a framework has been challenging to develop because it must necessarily consider both differences in disease threats and differences in culture and political systems across countries.” Mechanisms for good governance—including transparency, public engagement, and accountability—are as central to the landmark guidelines as more traditional ethical considerations such as social equity and justice.
The WHO Guidelines on Ethical Issues in Public Health Surveillance consists of 17 guidelines that make it clear that an ethical obligation to undertake surveillance is central. They are, thus, very different from research ethics guidelines that begin with limits in the name of individual rights and autonomy. “This is not to say that human dignity and individual liberty are not a vital part of these guidelines,” Fairchild said. “But there can be no question that they understand individuals as part of interconnected populations. The common good is fundamental when it comes to surveillance.”
With this document, this WHO initiative fills a void that leading international organizations like Council for International Organizations of Medical Societies, the World Medical Organization and United States and European centers for disease control have long recognized.
“It’s important to underscore that these are the first guidelines on public health surveillance, not the final word. The ‘big data’ revolution could be a game changer for public health, and the WHO network is now looking to address this challenge. But we also needed a clear starting point rooted in state-based surveillance,” Fairchild said. “More work and cooperation between nations with different government types, cultural norms and economic systems will be needed to fully build not just a unified ethical system for public health surveillance, but also a more clearly articulated, shared vision of public health ethics as a framework that is distinct from research ethics or health and human rights.”
This story by Rae Lynn Mitchell originally appeared in Vital Record.
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