On January 13, the McGill Research Group on Health and Law (MRGHL) hosted an interdisciplinary panel to reflect upon the delicate balance of individual privacy and public health. Panellists Dr. Anne Andermann, public health physician and member of the McGill Department of Family Medicine; Faculty of Law Assistant Professor Ignacio Cofone; and Khaled El Emam, University of Ottawa professor and founder of multiple data privacy and analytics companies; each offered a perspective from their respective field of study. According to the MRGHL, the panel aimed to address privacy concerns regarding contact tracing apps, specifically Canada’s “COVID Alert,” within a framework of the virus as a syndemic – not a pandemic, widespread over an entire population, but a crisis which more strongly impacts certain groups due to biological, social, and economic factors. Just as COVID-19 continues to disproportionately affect the elderly, racialized people, people with disabilities, those who are unhoused, and other marginalized groups, contact tracing apps, according to Professor Cofone, have the potential to disproportionately serve and surveil these groups.
Professor Cofone spoke on the surveillance of the “COVID Alert” app potentially creating an uneven distribution of who is surveilled and on how aggregated data from multiple platforms can encroach on people’s privacy. Although monitoring through contact tracing is necessary to slow the spread of COVID-19, the distribution of surveillance is determined by which groups have downloaded the “COVID Alert” app, he explained. Groups with lower rates of smartphone ownership, such as the elderly and those in lower-income brackets – although more at risk of contracting and being severely impacted by the virus – are under-surveilled by smartphone-sourced data, Cofone said. He also brought up the prevalence of over-surveillance of ethnic and racial minorities, which he claimed is a risk with any data collection platform, but in his opinion, not necessarily “COVID Alert.” The U.S. has seen such over-surveillance and racial profiling with the Patriot Act, according to Cofone.
While he supports contact tracing, Cofone warned against government agencies solely relying on the app because of installation rates that are low and do not reflect Montreal’s population demographics, as well as individual negligence to report a positive test result on the app, if installed.
Dr. Andermann highlighted the idea of distributive justice within the ethics of public health framework, asking, “Is the distribution of harms and benefits [of COVID-19 intervention] fair?” She noted that the Quebec Charter of Human Rights and Freedoms protects individual freedom and privacy, unless that freedom and privacy is at the expense of others, giving an example of such an expense by pointing to Chapter VIII of the Public Health Act. The chapter states that a report of infection “must indicate the name and address of the person and contain any other personal or non-personal information prescribed.” For Andermann, stringent privacy laws are a necessary tradeoff for the protection of public health, especially when there is an incongruence between who exercises freedom and champions privacy laws and who is affected the most by the virus.
El Emam spoke on possible ways to keep data private and still useful, in order to meet privacy concerns. He gave an example of the use of what he referred to as “deepfakes for data” in South Korea: fake data that is made to mimic real data without releasing personal information. He believes it’s possible to enhance the privacy and usefulness of health data in Canada, but a lack of generally accepted standards for health data sharing and a lack of infrastructure for data storage and refreshment are current obstacles to El Emam’s vision of harnessing mass health data for precision medicine.
Ultimately, in the words of El Emam, and as the other panellists agreed, “health data sharing is important, especially in the context of a fast-moving pandemic.”