The main function of public health programs is to keep the population healthy, and disease surveillance has been a key part of these efforts for more than 100 years. Tracking disease outbreaks, monitoring environmental and occupational health conditions, and keeping tabs on the public’s health and well-being are all vital because problems must first be seen if we are to correct them. Managing time and resources is a major challenge in disease surveillance, but there are many ethical aspects, such as equity, social justice, and privacy, that play just as important a role.
[Photo: Dr. Amy Fairchild]
Dr. Amy Fairchild, professor and associate dean of academic affairs in the Texas A&M School of Public Health, together with co-authors from Columbia University and the University of Sydney and Monash University in Australia, recently published an editorial about a new set of World Health Organization (WHO) ethical guidelines in the American Journal of Public Health. Dr. Fairchild and her colleagues discuss the importance of ethics in public health surveillance, the evolving view of ethics in this field and what the new WHO guidelines mean for institutions and governments as they carry out disease surveillance in the future.
Released by WHO in June, the Guidelines on Ethical Issues in Public Health Surveillance set forth an international framework that gives ethical guidance for WHO member states. This landmark document, the first to deal with surveillance on an international scale, consists of 17 guidelines that establish the roles of countries, limits on how data should be collected and uses, the rights of individuals, how findings should be communicated and what to do in public health emergencies, among other topics. The Pan American Health Organization (PAHO) is currently translating the guidelines into Spanish.
“Ethical frameworks developed in the wake of World War II and revelations about egregious violations of research subjects placed a priority on voluntary informed consent,” Dr. Fairchild said. “This standard wasn’t considered appropriate for public health surveillance, which analyzes data from large populations and must often be conducted without consent. But this didn’t mean that no standards should apply.”
The article cites years of continued disagreement on the proper amount of ethical review for public health surveillance and a major lack of formal guidance on the matter.
Surveillance is a valuable tool for public health programs, Dr. Fairchild and her co-authors state, but surveillance can lead to infringements on privacy and civil liberties. For example, reporting names and addresses can lead to discrimination and surveillance can lead to quarantines during a disease outbreak. Yet surveillance is also a tool for social justice, enhancing the ability of health officials to direct resources to populations most susceptible to disease and, indeed, discrimination. Clearer ethical guidelines both improve trust and make clear the affirmative duty to undertake surveillance, which is important for monitoring the spread of disease outbreaks and keeping an eye on environmental diseases such as asthma or exposure to pollutants.
“States can protect the public through surveillance, but that they are also capable of placing undue burdens on citizens. The new WHO guidelines serve as an overriding set of principles for public health surveillance,” Dr. Fairchild said. “To ensure the best outcomes, public health surveillance efforts will need openness and transparency and oversight mechanisms that ensure ethical action and protect rights while still helping to protect the public’s health and well-being.”