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This research paper explores the bioethical issue of electronic surveillance. Electronic surveillance features in many aspects of society globally, but this paper will focus primarily on the issue within a healthcare context. Two illustrative examples of electronic surveillance will be brieﬂy described, and the ethical implications of these highlighted and discussed.
This research paper will ﬁrst describe two types of electronic surveillance used in relation to healthcare. The ﬁrst, analysis of Internet search engine usage, is concerned with surveillance at a population level. The second, electronic surveillance of elderly and adults with intellectual disability in their own homes, is surveillance on a much more individual level. These examples will then be used to highlight the bioethical implications of electronic surveillance.
The word “surveillance” originates from the French word “surveiller,” meaning “to watch over.” Although this traditionally may have entailed someone covertly or overtly positioning themselves in the vicinity of another person and literally watching over them, in more recent times the advent of electronic devices has made it possible for surveillance to be performed remotely, both geographically and temporally. Electronic surveillance of some form or another has become almost ubiquitous in many societies and serves a number of purposes. It varies signiﬁcantly in its aims, the types of technology used, and the effects that it has on those who are watched.
Electronic surveillance is perhaps best known in the contexts of the protection of national security and the detection and prevention of crime. Technologies like closed-circuit television (CCTV) are commonplace and encountered frequently in public places, such as when walking down the street, entering shops, or using public transport. Although this common form of surveillance does raise complex ethical issues, some level of surveillance, particularly in spaces that are considered public, is seemingly tolerated and accepted by many, and this level of intrusion into individual privacy is apparently justiﬁed by the beneﬁts that it brings about: speciﬁcally increases in security and safety.
The revelations leaked by Edward Snowden in 2013 brought the issue of mass electronic surveillance to the front of the public consciousness and highlighted that surveillance is much more widespread and far-reaching than many had appreciated. Developments in technology have undoubtedly facilitated the increased levels of surveillance, including bulk collection, storage, and analysis of communications data. Surveillance now does not just entail watching over, but also listening, reading, and monitoring of sensors. The ethical and legal acceptability of this type of mass electronic surveillance has been scrutinized in detail since Snowden’s revelations, and regardless of the rightness or wrongness of Snowden’s actions, they have at least served to raise awareness of electronic surveillance capabilities. The idea that governments or security services are spying on citizens frequently brings out comparisons to Big Brother in Orwell’s 1984. The thought of one’s every move, and even thought, being watched and monitored may be alarming, but technology has developed and continues to develop at such a pace that the technological potential for constant and intrusive electronic surveillance seems greater than ever.
Although surveillance may be most often thought of in relation to detection and prevention of serious crimes and threats to national security, electronic surveillance is also a controversial and rapidly developing area of bioethics. Whereas surveillance may more typically have the aim of preventing or detecting criminal activity, surveillance can also have the aim of promoting health or assisting in the provision of care, and it is surveillance for these purposes that this research paper will focus its attention on.
Examples Of Electronic Surveillance
Online Public Health Surveillance: Google Flu Surveillance
Although some manifestations of electronic surveillance may use technology solely to gather data for the purposes of that surveillance, this need not always be the case, and electronic surveillance can reuse data that people routinely and voluntarily provide for other purposes. Internet search engines, for example, receive a vast quantity of data from their users when online searches are performed. Each time a person types something into a search engine and performs a search, the search engine receives information, and most of these retain this data for some period of time. This data includes obvious things, such as the search terms themselves, which are used to identify relevant results in the search databases. Search engines also receive, among other information, Internet Protocol (IP) address data each time somebody submits a search term. IP addresses can be used to estimate, usually with a reasonable degree of accuracy, where the user is located. Combining this data about estimated users’ locations and the search terms that they used, search engines are able to identify trends in search terms over time and in speciﬁc locations. This sort of information processing has commercial beneﬁt, as it is useful for targeting advertisements at users in certain locations, for instance. The most popular search engine, Google, has, however, since taken its ability to spot trends in search patterns and developed it for another interesting health-related purpose.
When people develop symptoms of illness, the ﬁrst thing that many do is type their symptoms into Google. Google therefore has masses of up-to-date search data linked to people’s symptoms, their searches for medication, and information about speciﬁc illnesses. By analyzing the search terms that people use and identifying those relevant to speciﬁc illnesses, Google has now created complex statistical models that allow them to track the spread of illness. If certain search terms of symptoms, for example, become very popular in a certain location at a particular time, then this would suggest that people in that location are starting to experience those symptoms. This is particularly useful for accurately tracking seasonal inﬂuenza epidemics and has also been used for tracking dengue. Google is not the only organization conducting this sort of tracking. Similar approaches have been used to process data from people’s social media posts and have been able to track the spread and development of food-borne illnesses (Harris et al. 2014), the common cold, and behavior that places people at risk of HIV (Young et al. 2014).
The advantage of this type of surveillance is that it allows for rapid detection and prediction of possible outbreaks of illness. Traditional systems can take 1–2 weeks to undertake and process similar inﬂuenza surveillance, whereas Google can provide daily updates (Cook et al. 2011), which assists in taking rapid action to control and treat the spread of inﬂuenza.
Electronic Surveillance In The Home: Telecare
Whereas online electronic surveillance of the type just described uses information that people have chosen to provide for non-health-related purposes, other forms of electronic surveillance are somewhat different. Increases in life expectancy have led to many countries having increasingly large elderly populations, and the resources required to provide appropriate care for these elderly populations are costly. Increasingly large elderly populations therefore signify increased care costs. Admitting elderly people into residential care homes, or for long-term hospital stays, is expensive and potentially restricts the freedom of those admitted, so there are good reasons to promote the independence of the elderly and assist them to live in their own homes for longer. The same is true for people with signiﬁcant intellectual disabilities, for whom it is now increasingly recognized that it is beneﬁcial to retain a reasonable level of independence. This, again, can be resource intensive as the support necessary to facilitate safe independent living can require regular visits from carers and support workers.
Developments in technology have led to an increased capability to provide care to patients remotely. An important feature of this technology is the ability to observe and monitor patients from a distance and to be alerted to signiﬁcant adverse events taking place. The advantage of this technology is that it can replace or reduce the need for regular visits from carers, which has beneﬁts in terms of cost-effectiveness which can help to make the widespread promotion of independent living a more realistic proposition. Rather than having a carer visit a patient regularly to ensure that they have not had a fall, sensors can monitor the patient to establish whether they have, for instance, returned to bed during the night. As well as the potential cost savings, promoting independent living for those who would otherwise require regular care and supervision can have other beneﬁts: whereas it may have previously been necessary to admit someone to residential care in order for their safety to be protected, this safety can now be better protected in their own home. The technology that provides this monitoring, however, which is crucial for the provision of remote care for patients, can also effectively place patients under surveillance.
This sort of remote electronic surveillance comes under the broad banner of telecare, which involves the use of alarms and monitoring systems with the aim of promoting independent living by providing some aspects of care remotely. The types of monitoring that can be used are wide-ranging and depend upon the individual needs of the patient, and the extent to which they can be considered as surveillance depends upon their precise nature and their implementation. Examples include bed and chair occupancy sensors, GPS trackers, and enuresis sensors. Some devices and alarms are, by their nature, designed to constantly observe patients. For instance, devices designed to monitor whether a person has returned to bed or to check for enuresis have to be permanently monitoring the patient in order to be effective. Due to the potential for embarrassment and associated stigma, patients may be unlikely to activate a user-initiated enuresis sensor, so its effectiveness at tracking instances of enuresis would be minimal.
Ethical Issues In Electronic Surveillance
Although the aims of electronic surveillance in healthcare contexts may be largely benevolent, insofar as it can help in the provision of appropriate responses to epidemics or can assist in providing care and reducing risks to potentially vulnerable patients, electronic surveillance can have other less desirable effects and raises important ethical issues which will now be highlighted.
An obvious ethical concept relevant to electronic surveillance is privacy, with surveillance often considered to be in tension with individuals’ rights to privacy. Privacy is a complex concept, and there has been extensive philosophical and legal debate over precisely what it entails, but for the purposes of this research paper, a working deﬁnition is the “condition of voluntarily being secluded from view of others and the public attention in general” (Harkiolakis 2013, p. 2082). Electronic surveillance means that, to some extent, people and their actions are observed, and this can include actions and behavior that a person may, ideally, wish to remain unobserved. Privacy is often recognized as a fundamental human right (United Nations Ofﬁce of the High Commissioner for Human Rights 2015), but some intrusions into privacy may be considered acceptable if they are traded off against corresponding gains in other things.
The level to which electronic surveillance intrudes upon privacy varies according to context and application. Electronic surveillance using people’s search terms to track the spread of infectious disease uses information that people voluntarily share, albeit not necessarily intentionally for the purposes of tracking population-level spread of illness. When people use Internet search engines or social media, they do so according to the terms and conditions of the companies providing the technology, and these usually include provisions for data to be used for research purposes. Search terms may be considered private data and can potentially reveal a lot about the person conducting the search, but Google makes it clear that it uses only aggregated data, which entails that IP addresses are removed once locations have been estimated and queries have been placed into its inﬂuenza model’s database. Although the results of the analysis of the aggregated data are made public, the individual searches used are not, and the results should not be linked back to individuals, so it would be difﬁcult to establish that a particular person had searched for information about ﬂu symptoms. So although this form of surveillance uses individual data, it is not so much observing individuals as populations. The anonymity that this provides therefore helps to protect individual privacy to some extent. Privacy concerns do, however, remain as a result of surveillance like this, particularly given its potential. Inﬂuenza is not a particularly stigmatized illness, but diseases like HIV/AIDS or other sexually transmitted infections are much more stigmatized, and online surveillance could be used to track the spread of these, and it is also technically possible for this to be conducted in an identiﬁable way (Carneiro and Mylonakis 2009).
Aspects of telecare are even more intrusive into individual privacy. Although there is ongoing debate about whether it is reasonable to expect privacy online, the general expectation of privacy when one is simply occupying one’s own home is more clear-cut. The number of times that one leaves one’s house during the day and where one goes, the ways in which one moves about within one’s own house, and one’s sleeping patterns are things that one could justiﬁably consider private and not wish to be observed by others. Although telecare may have advantages to society as a cost-effective practical form of provision for the elderly and those with intellectual disability, its impact upon the privacy of those to which it provides care must be carefully considered. For instance, a device designed to detect overnight enuresis and report this back to a remote center is monitoring something that would often remain private. Not only is this reporting back something that is highly personal and likely to be the cause of embarrassment, but it also reports it back in a way that allows the patient to be identiﬁed – the technology would not serve its purpose if the reporting was done anonymously.
The way that technology is designed and implemented, however, can have a bearing on how much it compromises privacy. Patients with dementia can have a tendency to wander from their home, which can leave them vulnerable if they become confused and cannot ﬁnd their way home again. Because of this, there are beneﬁts for some people with dementia to wear GPS tracking devices, which can monitor their location and report this back to a centralized system or a nominated relative or friend. It is technically straightforward to use a GPS tracking device which is “always on” and constantly broadcasting a person’s location to someone else, be it an individual or a data center. Using this device, the patient’s movements could be constantly observed, and their location would be accurately known at all times. The potential for this to be considered intrusive and an invasion of privacy is clear. In comparison, some devices may have the capability to track and report location, but only be activated if the patient presses a “panic button” when they need assistance. The patient’s location is then revealed to the centralized system, indicating that they are away from home and lost. This second type of device offers most of the beneﬁts of the ﬁrst (although effectiveness may be compromised in some situations, if, for instance, the wandering person is so confused or distressed that they forget that they are wearing the device), without requiring constant tracking of the patient’s location, so it is less invasive of privacy. Some privacy and data protection organizations have called for surveillance technology to be designed and developed so that privacy is protected to the fullest extent while still permitting functionality.
The Behavior-Changing Effect Of Surveillance: Autonomy And Consent
Closely related to electronic surveillance’s impact on privacy is its impact upon autonomy. Autonomy is recognized as an important concept in bioethics and is related to one’s ability to act and make decisions without external constraints. Autonomy will therefore be compromised if surveillance acts as a constraint on one’s actions and decision making. Surveillance outside of the healthcare context may sometimes be straightforwardly justiﬁed by appealing to consequentialist arguments about the greater good and aspects of paternalism, but bioethics has, in recent history, tended to have a much greater emphasis on individuals and their autonomy, which has to therefore be given more careful consideration. The types of surveillance described above will highlight the different possible impacts upon the autonomy of the people under surveillance, and it is clear that there is a risk that surveillance can sometimes operate as a form of control.
The impact of online public health surveillance like Google’s Flu Trends on individual autonomy is likely to be relatively low, as the impact on privacy is also (relatively speaking) low because data is collected anonymously and aggregated into large datasets before it is analyzed. Because collected data are not used in an identiﬁable way and there are no likely adverse consequences for people searching for ﬂu-related symptoms, people may be unlikely to signiﬁcantly change their searching behavior related to ﬂu as a result of it. Surveillance of this nature may, however, make individuals increasingly aware that their search terms are researched and analyzed and may make users reluctant to search for information relating to certain conditions. Fears may also abound about identiﬁable information being disclosed to health insurance companies or employers, which may again restrict the types of things that people consider searching for.
The types of surveillance involved in telecare are likely to impact individual autonomy more signiﬁcantly. One of the aims of electronic surveillance in telecare is to allow people to live independently and enjoy the additional beneﬁts in terms of autonomy and freedom that this brings. It is signiﬁcant, therefore, that electronic surveillance can also restrict freedom and be used to control individuals.
First, the monitoring devices are linked to speciﬁc individuals and have to be for the technology to work. The outputs from the monitoring devices, and any alarms raised, will also be viewed by people at a remote location. So unlike the aggregated search data, personal and private information about the lives of identiﬁable patients is revealed to others. Because of this, reports may have a signiﬁcant effect upon behavior. Patients may, for example, seek to avoid behavior that raises the alarm with the central data center. Although this might not in itself seem particularly freedom restricting, as many people may want to avoid the sorts of adverse events that might set off these alarms, some people may be so worried about setting off alarms that they avoid doing things that they would ordinarily want to do (Weber et al. 2012). Simply going for a brief walk outside one’s house may become worrisome if taking too long results in an alarm going off and carers being notiﬁed. If tracking devices are “always on” and notify carers of a patient’s location, then there are risks that the carer may also attempt to constrain the patient’s behavior under the guise of being protective. For example, if a carer became aware that the person they were caring for was attending a casino, they may attempt to remove that person from the casino in order to prevent ﬁnancial loss (Draper and Sorell 2013). Although this may be well intended and protect the person from the harm of losing signiﬁcant amounts of money, it could also fail to recognize an autonomous choice by the person being tracked.
Electronic surveillance can also remove one’s individual choices about what remains private and affect one’s ability to control the personal information that shapes others’ perceptions of oneself. For instance, a patient may wish to appear to their doctor as a compliant patient, who follows their medication regimen to every last detail. They may also dislike taking their medication and therefore choose to regularly not take it. Without electronic surveillance, the patient is free to choose to present themselves as the compliant patient, even though this may not necessarily be what is most helpful for the doctor. On the one hand, the patient may be more inclined to follow their medication regimen if they know that their doctor will be aware of their actions, which may be the best thing for them in terms of their health outcome, but equally this sort of surveillance constrains the actions of the patient: it makes it impossible for them to mislead their doctor, something which patients are ordinarily free to choose to do in many situations. Similarly, patients are often able to decide whether to report an adverse event to a carer or doctor. For example, if a patient has a fall and is temporarily immobilized but able to get themselves up on their feet again after some time, they may decide to not inform a carer or family member about their fall. Reasons for choosing not to inform someone could include a fear of being viewed as unable to live independently or a belief that the fall was not serious enough to worry anyone about. Just as patient autonomy suggests that competent patients should be free to choose whether to take their medication or not, it also suggests that patients should be free to choose which events to report to their carers or relatives. Telecare surveillance can take away this choice if it automatically notiﬁes someone of suspected falls, regardless of severity or ability of the patient to right themselves.
There are some clear beneﬁts from some level of electronic surveillance in the healthcare context. The potential to track outbreaks of illness assists the ability to adequately treat and contain pandemics. Similarly the ability to monitor patients remotely has the potential to promote independence and protect vulnerable patients. Many of the ethical concerns associated with electronic surveillance in the healthcare context stem from the potential misuse of data and what can be broadly termed “mission creep.” The same data that is useful for the provision of healthcare may also be useful for other purposes, many of which may be undesirable or otherwise far beyond the original purposes for which the data was collected. For example, location data obtained from GPS trackers may be of use to law enforcement agencies when investigating crimes. If law enforcement agencies were granted access to this data, innocent and vulnerable individuals could ﬁnd themselves implicated in crimes. People’s health-related search terms may be invaluable to health insurance companies when assessing the risks of insuring potential customers.
Whether the use of electronic surveillance to assist in the provision of care, on balance, enhances or hinders privacy and autonomy is the subject of some contention. Although, as discussed above, the surveillance that is intended to assist people to live independently requires a level of intrusion into people’s private lives and their home environment, and may also restrict their autonomy, this must be considered against the alternative possibilities. One such alternative is that telecare surveillance is abandoned, efforts to promote independent living for the elderly or those with intellectual disabilities are reduced, and increased efforts are instead made to provide carers and access to residential care. Aside from the cost implications of this approach, it is not obvious that removing the surveillance aspects of telecare would actually promote privacy and autonomy. For instance, a patient in a hospital or residential care home may have much less self-determination than someone being carefully monitored in their own home. The same would be true if more frequent or even constant supervision by carers was required, as this would impact signiﬁcantly upon both privacy and autonomy.
This research paper has described two examples of electronic surveillance and highlighted the key general ethical issues raised by these. As is often the case, however, there is a need to balance the potential gains from surveillance with the potential losses in individual contexts and cases in order to accurately assess the complete ethical picture.
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