Health data, privacy, and how the field of public health ethics can guide improved COVID-19 policy

As jurisdictions around the globe struggle to control the spread of COVID-19, challenges have emerged collecting data on where and how the virus is spreading and managing how that data is used. For Dr. Anita Ho, a bioethicist at the University of British Columbia’s School of Population and Public Health (SPPH) and Recover and Renew Fellow with the Emerson Collective, two guiding principles of health ethics – reciprocity and transparency – are key to tackling these challenges and improving trust.

Why is it that many willingly post their sensitive personal information on social media but yet are hesitant to download contact tracing apps or share this same information with contact tracers? Dr. Ho explains that these individuals are likely conducting a sort of cost-benefit analysis. “Social media is user friendly and there is psychology-based instant gratification with likes or engagement. People are not thinking about what comes next, or where the data goes when they post, but with contact tracing apps they lack the instant gratification and people think, ‘I know who I am in contact with, so why do I need to give up this information?” For many, the benefit of contributing to the greater good does not outweigh the risk to their economic security if they have to miss work or stay home due to an exposure.

“Until we ensure people have supports like paid sick leave and a safe place to isolate, some individuals may avoid testing and contact tracing out of fear of consequences like not being able to pay their rent or losing their job because they have to miss work.” Dr. Ho explains.

Further, research from SPPH’s Partnership for Work, Health and Safety found that workers who are unable to work from home – and might be exposed to the virus at work – are among the lowest paid and the least likely to have paid sick leave, a policy gap that has implications for the spread of infectious diseases beyond COVID-19. For these workers, enforcing health guidelines without providing support risks further stigmatizing and criminalizing poverty. “Adherence has been framed as individual responsibility, but it is really also an equity issue,” adds Dr. Ho.

The obligation for public health and governments to support individuals who are being asked to provide sensitive information or make sacrifices like missing work is known in the field of health ethics as reciprocity. Dr. Ho notes that especially in the context of contact tracing apps, reciprocity doesn’t currently exist. “For example,” she explains, “if someone tests positive and puts that information in the app, there are no added benefits in the form of support. And if contact tracing data shows that some populations are at increased likelihood of contracting the virus because they are in tighter settings, will there be more social resources to help those populations at a whole?” She argues that incorporating reciprocity in the form of additional support would likely improve both participation and trust in the process.

Dr. Ho notes that a perceived lack of transparency about where the information is going, who will have it, and how it is used may discourage cooperation and sharing sensitive personal details. In addition, some want to see more population data released in order to better understand the relative likelihood of contracting COVID-19 in different settings and the rationale behind guidelines, especially as public health guidelines change. Governments are trying to balance the amount and type of data shared with potential harms, like stigmatizing a neighborhood or giving individuals a false sense of security, but many argue more transparency is needed.

Individuals may be more convinced to follow guidelines if they are consistent with evidence that has been transparently shared and come from a trusted source. “For people who don’t trust scientists or public health, they might go to other sources that are more user friendly but are less reliable – or even wrong,” Dr. Ho adds. “So how do we partner with spokespeople and other sources of media to reach people in a way they are comfortable with and can trust?” She adds that grassroots communications efforts are key to reaching those who may be skeptical. For example, by having individuals and local organizations who have an existing relationship with a specific community help to deliver information.

Over the next several months jurisdictions will have to manage pandemic fatigue, control more infectious variants of the virus, and distribute the vaccine. In grappling with these hurdles, it is more important than ever that information be conveyed in a way that facilitates confidence in public health measures, informed by the principles of reciprocity and transparency. There are lasting benefits, too: providing tangible support to those in need and demonstrating responsible data management will build a legacy of trust that can be sustained, using these same principles, well beyond the pandemic.

By Elizabeth Samuels