In times of a disease outbreak such as cholera, measles, malaria, COVID-19 and others like them, time is of the utmost essence. Every single day that goes by is a day that lives could be lost and economies threatened. It is important that we find an effective way to gather health information on the general public to ensure we are providing each individual or individuals with similar health statuses with the medication that is best for them. Conducting public health surveillance during such times would greatly improve the speed and efficiency in which the disease is controlled.
Public health surveillance is a great tool that can be used for disease outbreak investigations and general research on any sorts of health risks that the public may come across or have already come across. Although all this surveillance can greatly aid us in improving the health of the general public, there are reasonably many ethical concerns that people would like addressed. In today’s article I will discuss the many ethical concerns regarding public health surveillance, the reasons as to why it is even necessary to surveillance the health of the public, and some steps that can be taken to ensure that the ethical considerations are met.
Phases of the ethical surveillance problem
Background condition: This is talking about the lack of proper guidance structures put in place for these surveillance systems. The lack of sufficient evidence for certain procedures used for surveillance, which reduces its overall effectiveness. Additionally, a couple of very essential conditions for successful public health surveillance were not entirely fulfilled.
Design and implementation: This is referring to the surveillance systems that have a pretty poor design. It may be lacking something in its core design or some changes need to be made on minor parts. There is also the issue of a surveillance system that would likely be effective, but because of various reasons it isn’t given much attention or funding.
Data collection and analysis: There is a chance that certain groups may be left out of the data collection, which would mean they won’t even benefit from all the surveillance conducted on them. Then there is the issue of privacy regarding storage and sharing. It is very important to be able to trust that the surveillance systems and the people behind it are doing their best. That no private information is being leaked or used for inexcusable reasons.
Use of data: This is referring to the risks of preventable situations being missed because not enough data is released to the right people. It is also talking about aimlessly sharing data to the wrong individuals or groups. They may have ill intentions and use it in ways that could put others at risk.
Ethical issues with surveillance
Improper framework: This refers to the lack of a proper guide that can be used to set the rules and regulations surrounding medical surveillance.
Failure to meet preconditions: This refers to the conditions that must be met before the surveillance of a particular area or field of study. These conditions are not always met, an example of this is the requirement related to the methods used in surveillance. There is also a lack of funding for technological development, which is a condition that must also be met.
Adequate design of the system: This pertains to the improperly designed models or systems of surveillance. Systems that do not adequately cover all necessary points can cause a minor or even major problem in the long run.There is also the case with surveillance systems that are properly designed and good for long term use, but cannot be used due to other barriers such as the costs.
Risk of running the system: When the system needs to be run, considerations need to be made on who is well trained enough to be able to handle any technological issues that may arise at any time during the surveillance. There can be training plans made but all that takes time and money.
Protecting autonomy: The public not being informed on the amount of data that is being collected and then not given proper information on how they can opt-out of the data collection. This is especially a concern with online sources as they are often vague in their transparency of just how much data they collect.
Producing inadequate information: Data collected from online sources might not always be accurate, as a lot of people are in the habit of not supplying accurate information to online forums. There is also the case in which there is a software malfunction that may distort the information stored in it. It is also important to be careful in collecting data from a small part of a population that may not be representative of the larger population of that particular area or group.
Inadequate consideration of minorities: There are many minorities that may suffer negative consequences due to surveillance. There is a risk of stigmatization by people that will only focus on the particular bias that they have when collecting data from minorities. Areas in which people do not have internet access may be excluded from surveillance, which may then cause them problems when there is a distribution of medical help.
Privacy in sharing data: Once the system is run there are multiple problems and issues to consider. One such issue is the type of data that these surveillance systems will extract and the people that will be receiving this sensitive information.
Inflicting harm on groups based on data: Illegitimate authorities or the people that are involved in data collection may ask for or distribute data to the wrong or dangerous individuals that can then put multiple people at risk.
Not putting data to use: There is the fact that we must consider which kinds of data to use and which ones to dispose of. It puts us in a position where we have to decide between multiple, possibly threatening, diseases and illnesses and scope out the ones we should give more priority to at that particular instance. (Klingler, C., Silva, D. S., Schuermann, C., Reis, A. A., Saxena, A., & Strech, D.)
These are just a couple of the major issues that can come with surveillance. As you can tell there is still a long way for us to go. These issues and ethical considerations must be made in order for us to move on to the next steps in the future of health and safety.
Justifications for surveillance
As there are ethical considerations, there are also justifications and things that ensure that people’s ethical concerns are met for the surveillance to be made in order for us to move forward. Some of these include.
Effectiveness: When public surveillance is used for medicine it can be very effective. We can get much needed information from the public that would greatly help in determining the sorts of issues we should focus on and how those issues can be solved based on how the public reacts to multiple different solutions.
Necessity: It is completely necessary to collect data on the mass public for improving our approach to solving various and large scale health issues. Surveillance allows us to find differences in groups of people that can greatly affect the effectiveness or reactiveness of certain drugs.
Less violation: The data collected via public health surveillance is given to the people from which the data is collected. The data is securely protected so that no outside risks are taken and there are options for opting out that people can make if they do not wish to be a part of the public data collection.
Proportionality: The potential benefits that come with public health surveillance greatly outweigh the risks. All sorts of health risks can be averted by the data collection. People that are potentially at risk of certain illnesses can be warned or protected because their medical information is collected.
Vulnerability: Data collected can be used to protect the most vulnerable in our society. The people from which the data is being collected are informed and are a major part of the decisions for these collections.
Legitimacy: Only proper and legitimate agencies are allowed to collect data from the public. The distribution of the data is highly protected and surveillanced to ensure it does not land in the wrong hands.
Harm prevention: Surveillance on a couple of people from different areas really helps in protecting most or all of the individuals in the area, not just the few that are being surveillanced.
Conclusion
With the continuously growing population, we must find ways to protect the health of the growing public. Surveillance technology has allowed us to move forward in a major way. Mass public health surveillance has allowed us to collect large amounts of very informative data that can then be used for bettering our health systems and efforts. Though of course, with the surveillance of the public comes ethical issues that many will have on their minds. It is important though to look at the bigger picture. One that shows us just how far we can go with all the data collected, if collected ethically and used wisely.
We as a public need to keep ourselves informed and up to date with all the new technological advancements that are happening at increasing speed. When we insert ourselves into these efforts that medical professionals and technological experts are exploring, we can ensure that they abide by the laws put in place for these very legitimate concerns. It is also within the right of the public to ensure the people and corporations that do not uphold these ethical considerations face the proper legal ramifications. With the efforts of the professionals and the public opinion, we can greatly impact the future of health and medicine so that everyone, no matter where they are, will benefit immensely.
Bibliography
Klingler, C., Silva, D. S., Schuermann, C., Reis, A. A., Saxena, A., & Strech, D. (2017, April 4). Ethical issues in public health surveillance: a systematic qualitative review.
Lee, L. M. (2019, March 14). Public Health Surveillance: Ethical Considerations.
WHO, World Health Organization. (2024, January 18). Framing the ethics of public health surveillance.
Hanjahanja-Phiri, T., Lotto, M., Oetomo, A., Borger, J., Butt, Z., & Morita, P. P. (2024, November 5). Ethical considerations of public health surveillance in the age of the internet of things technologies: A perspective.
Fairchild, A. L., Haghdoost, A. A., Bayer, R., Selgelid, M. J.,Dawson, A., Saxena, A., Reis, A. (2017, August). Ethics of public health surveillance: new guidelines.
