The Main Essence of Public Health

In today’s world of evolving technology, surveillance has become more and more prevalent in society. While people may think surveillance traditionally means video monitoring through laptop computers or street cameras, many do not realize there is much more to this reconnaissance. Public Health Surveillance is not seen as intrusive by many people as they continue their lives. The definition that the World Health Organization gives for public health surveillance is the “continuous, systematic collection, analysis and interpretation of health-related data needed for the planning, implementation, and evaluation of public health practice”(“WHO | Public health surveillance,” n.d.). Health officials will argue that this is necessary to keep people safe and healthy across a wider geographical range.

However, in the world of public health surveillance, there are few ethical guidelines for how data collection methods should be handled and implemented (Klingler et al., 2017). Therefore, without these guidelines, various public health surveillance techniques can be used for unethical and nefarious purposes that are nowhere near beneficial for many populations. Public health surveillance is not always a positive activity, despite the insistence of the public health community saying that it is. In this everchanging, globalizing world, public health surveillance is useful at times, but it needs to be reformed to accommodate for ethical concerns such as autonomy, privacy, targeting, and the broader slippery slope implications.

Public Health surveillance has a long history both in the United States and around the world. Nations have always been concerned about the spread of disease, and one of the best methods of tracking epidemics was through mortality rates; until 1900, death statistics were the primary way to classify disease (Das, 2015). Governments began to label diseases systematically and the population as an object of study during the eighteenth century (Das, 2015). Congress authorized a precursor to the United States’ Public Health Service to collect morbidity data about diseases such as cholera, smallpox, plague, and yellow fever in 1878 (Stoto, 2008).

To prevent the spread of different sicknesses, people would report different cases of disease to pubic authorities. For instance, when Rhode Island was a colony, the local government passed legislation that mandated tavern owners to report contagious symptoms they witnessed, indicating possible diseases that they saw in their patrons to health authorities (Smith, Hadler, Stanbury, Rolfs, & Hopkins, 2013). These types of laws spread until 1901, when all states in the U.S. were required to report selected diseases (Smith et al., 2013). Today, there are upgraded, technological systems of public health surveillance found in all states with some differences and similarities regarding what is reported (Smith et al., 2013). While there are many programs on the state level, there are also many federal programs that followed their own historical trajectory.

With different historical factors, federal public surveillance programs became just as prominent. In 1850, the U.S. first began publishing mortality in census data. Then in 1878, Congress authorized the federal government to collect necessary health data (Smith et al., 2013). This data was then published weekly with notifications of diseases requiring quarantine; these included cholera, smallpox, plague, and yellow fever (Smith et al., 2013). Still today, the Center for Disease Control maintains an infectious disease notification on the national level, known as the Morbidity and Mortality Weekly Report (Smith et al., 2013). With the rise of terrorism, many public health surveillance programs were also implemented in response to bioterrorism in the 1990s (Burkom, 2017). Shortly after 2000, efforts focused mainly on early detection, with scant attention to the protocols and resources of agencies monitoring population health (Burkom, 2017). Now, there are both federal and state programs around the country working for public health surveillance.

Protocols in place that aim to protect the individual from privacy intervention exist both at the federal and state level. Two main regulatory structures in place at the federal level are the HIPAA Privacy Rule, which regulates the use and disclosure of a person’s health information between different entities, and the Common Rule, which regulates federally funded research on human subjects (Gostin & Wiley, 2018). However, one could argue that these do not go far enough to protect individuals against the multitude of ethical concerns and could be better enforced to protect those they do.

When discussing the ethical implications of public health surveillance, it is important to point out that it is very different than other kinds of gathering health information. Since the data that is collected is personal and sensitive, the ethical values must be carefully considered. These actions are a type of one-sided surveillance, meaning they do not need consent, and this is a pre-emptive surveillance measure. In public health, it is no longer about protecting the patient, it is about keeping the entire population healthy.

People must now sacrifice their privacy for the benefit of the community. The kind of information that is collected by these systems is usually very specific and invasive. Data accumulated could contain information about a person’s health status, such as mental health or HIV diagnosis, behavior, such as sexual practices, use of drugs or alcohol, such as heroin use or liquor addictions, and genetics, including test results and family history (Gostin & Wiley, 2018). These actions of surveillance force people to consider the different values that come into play which include minimal interference, confidentiality, and transparency (Selgelid, Enemark, & Poku, 2012). The practice of public health compared to that of the typical clinical relationship is very different due to these values (Selgelid et al., 2012). These pieces of the ethical questions surrounding public health surveillance will tie into the two very important dilemmas of autonomy and targeting.

Before going in depth into these ethical dilemmas it is necessary to explain the three different kinds of surveillance that have been distinguished in the public health field: case surveillance, statistical surveillance, and syndromic surveillance. Case surveillance focuses on specific cases of diseases, it looks specifically at individuals or small groups and aims, with the goal of stopping the disease from spreading beyond that group or individual (Gostin & Wiley, 2018).

In the past, this kind of public health surveillance has been used to stop communicable diseases from spreading to the rest of the population (Gostin & Wiley, 2018). Case surveillance uses the police power of the federal government to prevent and contain communicable diseases that could be spread throughout the population (Stoto, 2008). Statistical surveillance looks at larger populations trying to find trends that that can influence legislation for public health (Gostin & Wiley, 2018). Syndromic surveillance is the ongoing collection of data in real time, looking for indicators of diseases (Selgelid et al., 2012). Bio-surveillance can be under this type due to the goal of quick reaction to respond to events (Selgelid et al., 2012). This kind of data collection requires the gathering of large amounts of health information before there is ever any actual disease outbreak (Stoto, 2008). These different types of public health surveillance come with their own structures and therefore their own ethical problems.

Michel Foucault discusses the philosophical views surrounding public health surveillance using the panopticon. Foucault mentions the importance of power structures when it comes to private health information that governments gather. Jeremy Bentham created the idea of the panopticon to use in prisons so that guards could see the entire prison, but the prisoners never knew if the guards were watching them or not, forcing them to police themselves (Couch, Han, Robinson, & Komesaroff, 2015). Foucault built on this and argued that this idea, the few, meaning public health departments and institutions, watching the many, or the entire population of the country, applies to public health surveillance (Foucault, 2012). These positions of power enact surveillance functions like assessments, classification and diagnosis, which in turn objectifies humans and their behavior (Foucault, 2012). This panoptic idea also applies to public health surveillance because people are encouraged to monitor their own health and behaviors, which emphasizes control and self-discipline (Couch et al., 2015). This idea is illustrated in personal breast exams, where women are encouraged to check themselves and bring anything suspicious they see into their doctor. The individual has become the prisoner, constantly checking their behavior to appease those public health officials watching them through different surveillance techniques.

The positions of power that doctors and health workers hold in these situations maintains their dominant spot in a hierarchy over the populations they are tasked with monitoring. Every part of the public health surveillance and medical process is decided by bureaucratic public health officials and medical practitioners. A person’s symptoms, what disease they have and what they will do about that disease are usually dictated by those in power, who also make money off of the entire process, and the individual has no autonomy. Public health surveillance continues to enforce this hierarchy by giving those in charge even more power and less transparency.

The main ethical debate surrounding any kind of public health surveillance is individual health versus group health. The autonomy of people is one of the values most important to the United States as a country, yet in this instance, people are usually willing to compromise their personal freedom of privacy when it comes to public health. This allowance is an incredibly dangerous step, because many times, this data is collected without people’s consent. This collection of data and structures of public health happen outside of the traditional health care system, with data being gathered by government public health departments from a patient’s health care provider without the individual being informed or giving their consent (Selgelid, Enemark, & Poku, 2012). Many scholars have pointed out that this specific approach to public health surveillance is very different from other medical approaches to patient care (Selgelid et al., 2012). Typically, the patient has autonomy in their medical decisions and is always informed about their options.

After many instances throughout the history of the U.S. of public health scandals involving patients subjected to detrimental forced procedures and concealed medical practices, serious legislation has been passed to avoid this possibly in the future. Yet, when it comes to public health surveillance, these strong feelings are brushed aside, and information is easily taken without a patient’s consent. Medical professionals are supposed to be completely transparent with their patients; this should not be any different with public surveillance. When consent is taken away from an individual, they no longer have autonomy over their information and cannot make their own decisions.

Besides individuals being able to make their own decisions about their personal medical information, the issues surrounding overall privacy becomes important when dealing with public health surveillance. Privacy, civil liberties, and personal freedoms must be addressed, since the dangers around sharing an individual’s data with entities outside the public health system are plentiful (Klingler et al., 2017). The possibility of data breaches and unauthorized access to private information are worrisome, especially with sensitive health information being collected by private sector companies. Public health surveillance claims to be focusing on diseases that are easily spread through populations, yet there are many of these instances of non-communicable sicknesses being analyzed using personal data, which does not justify someone forfeiting their privacy. Additionally, the developments in surveilling populations specifically for chronic disease focus on persons rather than the actual population. Individual case reports of patients’ illnesses are used to monitor obesity, diabetes, and other non-communicable diseases (Stoto, 2008). This type of surveillance is no longer looking for trends indicating disease outbreak; they are screening people for chronic diseases. Privacy is at risk when public health surveillance begins to zero in on an individual level, rather than using anonymous data from the entire population.

More specifically, syndromic surveillance has huge problems with privacy due to the structures used to collect data. When analyzing the population for a disease, syndromic surveillance assumes that people will develop symptoms, stay home from work or school, try to self-treat, and then see a doctor, before they are actually diagnosed with a communicable illness and reported to the health department (Stoto, 2008). Therefore, to track all of these things, syndromic surveillance is able to obtain data for absenteeism, sales of over the counter products, calls to medical hotlines, counts of emergency room admissions, and primary care physician reports (Stoto, 2008). These abilities are breaches of privacy, they happen even when there is no disease outbreak occurring. Furthermore, they often include personal purchases, whereabouts, and private medical discussions, which can encompass extremely specific details about an individual’s personal life outside of their health.

Another major ethical dilemma with public health surveillance is the idea of targeting specific groups, which ends up adversely affecting many people. “Targeting” includes public health surveillance that focuses on specific populations deemed to be more “at-risk”. Sometimes this attention on a certain group is understandable, people in a certain geographical area are infected with a specific contagion. However, there are times when focusing on a certain type of group of people is dangerous. Targeting can fail to recognize the different social conditions that can cause or are related to poor health (Krupar & Ehlers, 2017). These conditions can include socioeconomic status, institutional racism, and gender inequality. Public health surveillance’s focus on biomedical diseases can ignore the systematic problems that populations face that need to be fixed to truly solve issues. When specifically discussing race, people often forget that it is a cultural construction. Public health surveillance can target populations that are connected by race, creating the belief that people need race-specific healthcare (Krupar & Ehlers, 2017). This race-specific idea of health just continues the cycle of the belief that race is biological, when it very much is not.

Another problem with public heath surveillance and targeting is the creation of patients that are not actually sick, which causes people to stigmatize and profile them despite their actual health status. When public health surveillance looks at different populations that are deemed “high-risk”, but are not yet sick, they lock these populations into the role of the victim before the disease has even emerged. These hot spots are then subjected to greater focus by different administrations, featuring the implementation of policies that promote financial exploitation and securitization, despite these being unnecessary (Krupar & Ehlers, 2017). Additionally, targeting different populations can create stigmatism surrounding those groups and geographical hot spots. This targeting supports the belief that these hot spots are a danger to the United States because of their designated sickness (Krupar & Ehlers, 2017). By locating these areas, public health surveillance has transferred the blame and placed responsibility on the people who are there, which marginalizes them (Krupar & Ehlers, 2017). By obtaining large amounts of data, governments can discern normative areas versus deviant ones, which are then subjected to policy focus to reduce the nonconforming areas sometimes using moral arguments against these groups (Couch et al., 2015). The actions of public surveillance are hugely detrimental to specific communities.

One example of such a group who is at risk in these data collection methods are HIV positive individuals. Strategies that aim to gather information about HIV/AIDS can result in targeting certain vulnerable groups and public release of their data (Klingler et al., 2017). In this way, trying to identify high-risk individuals can lead to stigmatization and discrimination. An example of these detrimental reporting techniques is how all states require that people who have been diagnosed with AIDS be reported by name to their local or state health department. These cases, often include information on age at diagnosis, sex, race, ethnicity, area of residency, mode of exposure to HIV, and time of the diagnosis (Stoto, 2008). This is disastrous for communities who already face financial, social, and medical barriers in society. Other scholars have accused public health surveillance technologies of being part of neoliberal biopolitics and control of the government over people’s health (Krupar & Ehlers, 2017). This usage subjects marginalized communities to a cycle of structural stigmatization.