By Yojana Sharma
originally published in University World News
Several countries and cities in Asia were able to swiftly control local outbreaks of COVID-19 in part due to the use of contact-tracing apps which locate and isolate those who have been in contact with a patient, to better contain contagion.
However, such mobile phone apps have raised data privacy and bioethical issues around their use in public health.
“Public health relies on good quality surveillance,” noted Angus Dawson, professor of bioethics and director of Sydney Health Ethics at the University of Sydney, Australia.
However, “contact tracing can generate all kinds of ethical problems,” he said, speaking at a June webinar organised by the bioethics group of the Association of Pacific Rim Universities’ (APRU) Global Health Program, noting that it raises issues of privacy, informed consent and confidentially.
“One of the concerns is what actually is the data being collected,” said Dawson. “How much of it is identifiable data in relation to particular individuals?”
“It is not just a technical issue but a medical one too,” he said, adding that “every intervention in the COVID area has to involve ethical considerations – whether we are talking about distribution of protective equipment, ICU beds, or hopefully in the future when we might have some vaccines.”
Apps in use in the region include the Alipay Health Code app in China, which codes people as green or red depending on their health status and requires identity card details as well as full face scans.
Hong Kong has the StayHomeSafe app combined with a wristband linked with the app. Developed by Gary Chan, a professor at Hong Kong University of Science and Technology, the app maps a unique footprint of a person’s locality. Stepping out beyond certain perimeters triggers an alert. Taiwan’s Intelligent Electronic Fences System app uses different measures, but with similar functionality.
New Zealand’s NZ COVID Tracer app is based on a ‘digital diary’ of places visited by individuals by scanning the official QR codes, which can alert and be shared with contact tracers.
Singapore’s TraceTogether app, developed by the Government Technology Agency together with the Ministry of Health, exchanges short-distance Bluetooth signals between mobile phones to detect other TraceTogether users in close proximity. The data is shared once the individual is contacted by contact tracers. The Singaporean app has also been adopted in Japan and Australia.
Some of the apps have supplementary functions where individuals can input symptoms to create an alert.
What happens to the data?
Calvin Ho, associate professor in the faculty of law at the University of Hong Kong researching health and biomedical technologies, said international health regulations drawn up by the World Health Organization (WHO) “put a lot of emphasis on technological surveillance as well as rapid technological advances, but it did not quite anticipate the developments that have arisen from this particular [coronavirus] outbreak”.
In many of the countries and cities where mobile phone use is high, such apps “have been very effective in controlling the rate of infections – many of the cities did not have to introduce a complete lockdown”, Ho said during the webinar.
“However, privacy is a huge question. We do not yet know what is going to happen to the data,” Ho said. “There needs to be public discussion on what principles of data protection have to be observed.”
For the public to be willing to take part, trust and transparency is crucial, he added.
“In the midst of an outbreak, as we have seen in South Korea, for example, people are very conscious about social responsibility. There’s a very strong societal and peer emphasis so people tend not to invoke their right [to privacy] straight away. That seems to be the phenomena right across East Asia,” he said. But also in Australia and New Zealand, people were extremely cooperative.
In Western Europe and the United States, people have been more vocal on privacy issues.
“Privacy has not been highlighted as a huge issue across Asia, particularly in the initial stages,” Ho said. “But it does not mean these concerns are not there. Individuals remain concerned about what’s going to be used out of all the data that’s been collected about them. It’s very vivid in their minds.”
Involvement of tech giants
Ho described the use of such mobile technologies as a form of “mass surveillance”. Some ethical principles are not always followed with surveillance, he noted.
The WHO Guidelines on Ethical Issues in Public Health Surveillance, published in 2017, state: “Those responsible for surveillance should identify, evaluate, minimise and disclose risks for harm before surveillance is conducted. Monitoring for harm should be continuous, and, when any is identified, appropriate action should be taken to mitigate it.”
Ho, who helped draft the WHO guidelines, noted that they were drawn up with governments and public health systems in mind, rather than corporations or NGOs.
Ho pointed to the involvement of technology giants such as Google and Apple in developing some of the apps in use during the pandemic, which raises questions of “whether we are further empowering very powerful industry players with control over public health measures”, and added that it is unclear what such companies will do with the data.
“Technically, the data will be owned by these commercial developers. With other contact-tracing apps there should be an agreement with the public at the authority and then the data belongs to the public health authority,” Ho told University World News.
Ho added that if such companies are not carefully monitored, “then ultimately it does mean that these huge commercial entities could potentially exploit public health systems and potentially vulnerable individuals, essentially for political gains or some kind of influence over government”.
Balance of public health and privacy
Dawson, who is also one of the drafters of the WHO guidelines, said COVID needs to be thought about as a “global ethical issue, and not just a concern to an individual”.
Issues of data ethics and the balance of personal privacy often “come down to the advantages we might have through having that data”, Dawson said. Public health systems “can have very good reasons to try to understand what the levels of infection are in different regions and cities across the world and then use that to plan how they are going to respond”.
He noted that with some of the recent contact-tracing apps, “some of that data is identifiable and some is not”.
“We should not just think public good versus privacy. There are ways to try to think about how they are both important and we can put protections in place, for example putting coding attached to individual level data to make sure individuals can’t be identified,” Dawson said.
Bioethical principles used in conducting medical research can be useful in guiding use and data issues surrounding such apps.
This kind of surveillance “is very similar to research in many ways”, said Ho. “It can involve similar methodologies and activities. These can include systematic investigation, medical record review and data mining.”
Both involve human subjects and both can raise similar ethical issues, including exposure of subjects to risk, standards of care and questions about informed consent. However, Ho pointed out: “Informed consent is a basic tenet of research ethics, but it is often not sought in the context of surveillance.”
Biomedical research has strong regulations in place and systems overseen by ethical committees in universities, hospitals and research institutions.
“There is less institutional oversight for surveillance, which means app-based surveillance, data and research derived from it may not undergo ethics committee reviews,” Ho said.
With academics and researchers well trained and experienced with research ethics, they can contribute to improving bioethical aspects of surveillance, Ho said, adding that university input into issues of data governance, accountability and transparency measures were likely in the wake of the pandemic.
Mellissa Withers, associate professor at the department of preventative medicine at the University of Southern California in the US and director of the APRU Global Health Program, said the bioethics group within the APRU programme would continue to look at such issues to inform policy-makers.
“A lot of the experts are involved in research ethics committees, and they are very active in reviewing the ethics of human subject research in their own universities, but more needs to be done across universities and, in particular, there is a real need for sharing and doing training in low- and middle-income countries,” she noted.
“There was a lot of interest from [those in] the Philippines and Indonesia attending the webinar which shows they really want some guidelines and recommendations on bioethics. They are interested in building capacity around these areas and learning what’s going on in the field.
“Structured regulation needs to be in place or at least these ethical issues need to be considered because there is the opportunity for [data] misuse by governments,” Withers told University World News.
“We need more standardised policies that can be implemented across countries because it won’t go away even after COVID-19. The amount of data collected for public health purposes is growing exponentially every year.”