Where Does My Data Go? Privacy Implications of COVID-19 Contact Tracing
June 26, 2022
By Milena Ozernova ’22
If the person who sat next to you on your flight yesterday tested positive for COVID-19 today, should you be notified? Would you have to be isolated, and who would provide for your family if you had to miss work?
More than two years into the pandemic, the question of whether and how to track those infected with coronavirus remains a challenging one. Contact tracing – notifying people who may have been exposed – can break the chains of viral transmission through the rapid identification and isolation of cases, but what are the implications for our privacy?
Nima Agah, a Duke Law student interested in technology and ethics, joined a Bass Connections team to study attitudes toward sharing health information and examine North Carolina’s use of contact tracing.
In addition to comparing different contract tracing systems in Mexico, the U.K., France, Israel and South Korea, Agah and his fellow team members studied Americans’ attitudes toward sharing health information, in general, focusing on the Black and Latinx communities who have been disproportionately impacted by COVID-19 and have historical reasons to mistrust public institutions. On a local level, the project examined all 100 counties in North Carolina to assess and compare contact tracing policies.
“The project involved a lot of questions of government trust, people’s trust in medicine, existing regulatory systems, people’s privacy protections or lack of protections, and how they interacted with each other in the middle of a pandemic,” Agah explained.
The interdisciplinary mix of law, ethics, technology, public policy and sociology made the project especially appealing, he said. From his personal background, he knew that one’s decision to trust the government largely depended on their community, race, sexuality, income and politics, so it felt important to study all the aspects of the contact tracing practice.
Agah’s subteam spent the first half of the project designing survey questions related to contact tracing, technology and demographics. Students ironed out their survey design, received Institutional Review Board approval and sent the survey out to different groups of people.
“We also asked questions related to other factors of people’s demographics, such as politics, sexuality, education level — things that we thought might correlate with different attitudes related to trust,” Agah explained. “Which companies do you trust, which members of the government do you trust with regards to COVID messaging and contact tracing, and even what methods of COVID information and disease control do you prefer? Is it using a contact tracing app, using exposure notifications, or just dealing with people one-on-one and contact tracing?”
After receiving over 1,200 responses to their survey, Agah and his teammates looked for differences between cities versus rural areas when it came to sharing information about COVID-19 and contact tracing. Their research revealed that the primary way for counties to communicate with their citizens was through online dashboards with information about testing, resources and statistics such as deaths, hospitalizations and positive tests. However, students uncovered shortcomings that limited the population’s access to information about contact tracing and privacy.
“Most counties did not have a specific section [on their dashboard] about privacy,” Agah said. “We actually found an absence of information telling communities publicly whether their information would be private if they worked with a contact tracer. Or, if someone from the county approached them for information, whether their data might go into one of these dashboards. At the same time, we didn’t see anything negative about privacy — we just saw an absence of it. We saw it as something that counties could do better."
Throughout the pandemic, rapid change was the norm. “It was a quickly evolving situation with different government regulations, different news about the disease and different ways in which scientists, doctors and members of the medical community would think about it,” Agah recalled.
As a result, Agah found that the constantly evolving nature of the research problems led to a project that could easily span over his entire graduate career as opposed to just two semesters. Agah noted that there were moments when team members would reach new conclusions and say, “Wow, that’s really interesting, but someone else is going to have to do that!”
As a graduate student studying law, Agah found it refreshing to work with students from different backgrounds and compare their work and perspectives. At the same time, Agah was happy to use his specialized knowledge to help other students with legal research or other research aspects that were closely related to his areas of interest.
“It was nice being able to talk to policy students who are close to law but have a different perspective on it, or students from public health, computer science or politics. Everyone was able to add their own perspective, and it enriched the way I think about things, whether it’s health-related regulation or privacy regulation,” Agah shared. With the input from other students, professors and industry experts, Agah now knows much more about the technology sector and believes that exposure to different disciplines can certainly help students studying law.
In the future, Agah plans to work at the intersection of technology, life science and law, where privacy is an ever evolving and dynamic matter. “[This project] was some of my first exposure to privacy law here at Duke, and it’s become a part of the courses that I’ve been taking,” he said. “It showed me another path in terms of practice and subject matter in the law.”.
Technology is being heavily scrutinized in the media. People are wondering what’s happening to their data. Is this becoming a currency? Are we being exploited in the ways this is used? Is this beneficial for society? It’s a matter that is deeply implicated in the privacy law and very important in the regulatory space now. We’re looking at potential crackdowns on big tech companies, such as Facebook, Instagram, Google and Amazon. Privacy is a part of this equation and so is the way that these platforms affect people, depending on who they are and the way their data is being interpreted — and the way [tech companies] target people with different information about COVID. There are a lot of good reasons to care about privacy, about government trust and the law, and this project did a great job of picking an area to dive deep into the matter. –Nima Agah
Duke University senior Milena Ozernova is a Bass Connections communications assistant majoring in Political Science. Milena loves to travel around the world, write articles on the issues that matter to her and the student community, and take photographs of street cats.
- Learn more about the 2020-2021 Privacy Implications of COVID-19 Contact Tracing project team.
- Explore other project teams that tackled issues related to the COVID-19.
- Read more stories from students on their Bass Connections experience.