In a paper published last month, we argue that the emerging emphasis on digital technologies in the global tuberculosis (TB) response is ushering in a new era of data colonization and surveillance in the name of public health. We assert that, despite some promise, digital adherence technologies for TB create copious amounts of data that threaten to infringe human rights, ultimately hindering the disease response. The elephant in the room (or in the paper), of course, is the coronavirus outbreak and the ever-growing, fast-changing government responses. Should we applaud or be terrified about the government leveraging social media, smartphones, and other technologies to find and track people with coronavirus? What role should the Big Five—Alphabet (Google’s parent company), Amazon, Apple, Facebook, and Microsoft—play in supporting the response?
In our paper, we note big tech companies’ coordination with the World Health Organization (WHO)’s effort to curb the spread of disinformation and falsehoods early in the coronavirus outbreak. Since then, tech companies have begun to work with each other, the United States government, and other national and sub-national governments to stop the pandemic. The biggest players are Apple and Google who announced this month that they are working together to create an “infection-alert system” to “help governments and health agencies reduce the spread of the virus” by alerting people if they have come into contact with someone with coronavirus. And the U.S. Senate Committee on Commerce, Science, and Transportation held a hearing earlier this month to “examine how consumers’ privacy rights are being protected and what the U.S. government plans to do with COVID-related data.”
Finding people with the virus, protecting others from infection, and promoting the dissemination of accurate information about COVID-19 are obviously commendable aims. But the entanglement of global and national health authorities with tech companies that produce and commodify massive amounts of personal data raises serious concerns. This kind of expanded public health surveillance will produce and provide government and private corporations access to enormous amounts of personal data about every aspect of our lives, far beyond what’s needed to combat COVID-19.
As we explain in our TB paper, the production of big data carries unique risks in the context of an infectious disease response. It’s almost certain that violations of privacy will abound in an environment where tech companies work together and with governments to track people and produce data on their health and associations. We know from the HIV and TB responses that privacy and confidentiality, while justifiably limited in some circumstances, are critical bulwarks against disease-based stigma and discrimination. We have already seen ample evidence of stigma against Asian-Americans and people thought to have COVID-19. The CDC, United Nations, and other groups have raised concerns and provided guidance on reducing coronavirus-related discrimination. It’s long been understood that HIV-related stigma and discrimination in employment, education, housing and health care have devastating impacts on individual lives and hinder the global and national HIV response. In other words, respecting privacy and protecting against disease-based stigma and discrimination promote health seeking behaviors, encourages people to get tested and treated, and leads to better individual and public health outcomes.
We are not advocating against the use of technology and big data in the COVID-19 response. We recognize the unique contributions that technology and data, as well as the large companies that produce and manage them, can make in slowing the spread of coronavirus. Instead, we highlight these concerns to promote a robust, informed conversation about the risks and advantages of leveraging technology during a disease outbreak. In particular, privacy protections in federal and state law should be considered in the development and implementation all COVID-19 interventions, including contact tracing, adherence technologies, and other forms of digital data gathering. And we encourage people affected by coronavirus-related discrimination to make use of protections against disease-based discrimination under the Americans with Disabilities Act that have been effectively used against TB and HIV discrimination in employment and health care settings
In short, it’s critical that during this unprecedented emergency we don’t stumble blindly into a new era of enhanced mass surveillance and widespread discrimination in the name of public health.
Brian Citro is an Assistant Clinical Professor of Law at Northwestern Pritzker School of Law and a member of the Center for International Human Rights. He is also a Technical Consultant for the UN Development Program HIV, Health and Development Group, and the UN Stop TB Partnership. Prior to this, he taught at the University of Chicago Law School in the International Human Rights Clinic. He also served as Senior Research Officer to the UN Special Rapporteur on the Right to Health and as Project Manager of the Global Health and Human Rights Database at the Lawyers Collective in New Delhi, India.
Kat Albrecht is a JD/PhD Candidate in Sociology at Northwestern University, a Law and Science Fellow at the Northwestern Pritzker School of Law, and a Research Affiliate at the Duke University Center for Firearms Law. Kat’s work sits at the intersection of computational social science and law, where she uses innovative computational techniques to study violence, data surveillance, and racial disparity in arrest. She also organizes the Summer Institute in Computational Social Science (SICSS) Chicago.