If public health ethics could be generalized into a few dramatic words, it would be, “It’s you versus the world”. The reason being that the ethical tangles in public health often lead to difficult balancing acts between an individual’s dignity, autonomy, and liberty and the greater public’s requirement of social justice, equity and interdependence. In other words, the individual’s values are pitted against the public’s values. One fascinating example of ‘public vs. individual’ is public health surveillance.
Surveillance is the, “collection, analysis, and use of data to target public health prevention. It is the foundation of public health practice.”1 Surveillance is necessary to plan, implement and evaluate public health programs, and without it public health is “blind”.
Patricia Sweeney, MPH and Leonard Ortmann, PhD came to Emory Center for Ethics on Thursday, December 15, 2011 to discuss the latest ethical tangles in HIV surveillance in America. In a talk titled, “New Uses of Public Health Surveillance Data to Improve HIV Care and Reduce Transmission: The Ethical Challenges of Innovation,” the pair described the latest efforts to link HIV surveillance back to the patient’s clinical care.
Currently, the CDC collects information about HIV-infected individuals from their physicians for surveillance purposes. This is called case reporting. This gives the CDC a large list of identifiable people that are HIV-infected. It also lets the CDC know where this patient is receiving care, whether they’ve had various tests performed in the last year, among much more information that can help the CDC track HIV infection in America.
If HIV surveillance collected from patients were to be kept confidential by the CDC and other public health institutions, the patient’s right to privacy and confidentiality would be honored. But, Patricia and Leonard ask, by having data about identifiable individuals, do we have a moral obligation to use that information? For example, many HIV-infected individuals do not know they are infected, but have been tested for HIV surveillance purposes. The CDC knows they’re infected, but they don’t know they’re infected. Informing people of their status and getting them into care could save not only their lives, but also their loved ones, or – if they are a pregnant woman – their unborn baby from becoming HIV-infected.
Lately, state and federal public health agencies (i.e. in Louisiana, New York, and Washington DC) have been experimenting with taking the information gained for HIV surveillance purposes and linking it back to patients who visit the doctor. If a person who is an HIV-infected pregnant woman goes to an antenatal clinic, a message could pop-up in her medical record saying so.
But does tracking individuals like this look too much like “big brother” watching your every move? Also, some epidemiologists might say, “Don’t rock the boat! We’ve always done it this way.” As Leonard said, such is the challenge with innovating – whenever the government changes something, people will say, “Whoa! What are you doing? Don’t go changing things on me.” Whenever innovation happens, efforts must be made to maintain the trust of the public. This is part of the reason why change should be made with collaboration from the public, so that they are involved in the process and understand the need for change.
In the case of HIV surveillance, linking surveillance data to clinical care is a way to honor the individual while still carrying out the responsibilities of public health. But doing so is more than a big change – it affects the public health infastructure as well as the health system. Thomas Frieden, director of the CDC, came up with the health impact pyramid (see figure).2 The things that have the biggest impact on the public’s health are the lowest on the pyramid. But they also are the most controversial. This is where the ethics comes in. When people have different perspectives, how do we decide whose perspective should be turned into action? Should the public’s health take precedence over the individual’s right to privacy and confidentiality? Should an HIV-infected individual be able to go to the doctor without being harassed to take an HIV test? Should surveillance – which often collects information about someone not for his or her own benefit but for the benefit of the public – be linked to clinical care so that someone not aware of their HIV status be informed that they are infected?
What do you think? Do you advocate for “you” or the world?
Michael Arenson is a graduate student in the Master's of Arts in Bioethics program at Emory University.
