A long history of surveillance and racist medical experiments does not make Black Americans want to give up personal information to the government.
The record number of daily coronavirus cases recorded in states like Arizona, Texas, and Florida last week makes it clear: The United States still does not have a handle on the pandemic. But one of our most crucial tools for addressing the coronavirus — contact tracing, the process in which public health agencies work to identify whom infected people have been in contact with, and encourage testing and quarantining — is being hampered by another major problem: racism.
When I was working with a number of colleagues at Johns Hopkins University to write our recent book on digital contact tracing in pandemic responses, we were focused on the ethics issues that need to be handled correctly to make such apps work properly. We found a consensus among experts on a key point: For any large-scale digital contact tracing system to work, people need to trust that their data will be handled safely.
But the protests against police violence and racism have highlighted that trust in authorities isn’t something that is widely felt in America right now. Protesters aren’t especially eager to hand over their personal information. Then there is a significant and longstanding distrust of public health authorities in Black communities, dating back to racist medical experiments and unequal health care systems. Even before the protests began, one study suggested that Black Americans may be more likely to oppose a digital contact tracing app.
“When the looting and rioting started, we — black people — were again seen as a threat to law and order, a threat to a system that perpetuates white racial power,” wrote Charlton McIlwain, a professor at New York University and the author of Black Software, in the MIT Technology Review. “It makes you wonder how long it will take for law enforcement to deploy those technologies we first designed to fight covid-19 to quell the threat that black people supposedly pose to the nation’s safety.”
You can already see the effect this distrust is having on contact tracing in some places. In New York City, where police have a track record of surveilling protesters against police violence, Mayor Bill de Blasio asked contact tracers not to specifically ask people who are Covid-positive if they attended the protests. The idea is to encourage people to get tested even if they don’t trust public authorities. But this also makes it harder for contact tracers to identify if the protests themselves served to spread the virus, which would provide important information about how the virus spreads more generally.
While it seems that the ongoing protests so far haven’t caused a rise in Covid-19 cases — the current spike is likely due to premature state reopenings — it is still important for public health authorities to rebuild trust with vulnerable populations, including those marching in the streets.
Black Americans have been hit hardest by Covid-19 so far, dying at 2.4 times the rate of white people in the US. Even when controlling for factors such as health insurance and preexisting conditions, African Americans are still dying at such a rate that researchers are acknowledging that racism itself is a cause for these discrepancies. If we want to curb the disease’s spread and help the communities that are most at risk, we need to start thinking about ways to repair the damage done by those we’re supposed to trust with our health and safety.
The public’s rightful distrust of authority could make them less inclined to work with contact tracers
Traditionally, contact tracing is an effort by public health agencies to support people who have become infected with a communicable disease, and to reach out to those who may have been exposed to encourage them to get tested and quarantine if needed. Due to the high risk that presymptomatic people may spread the virus to others before they know they’re sick, and the fact that few states have enough contact tracers as it is, there’s a lot of optimism that manual contact tracing can be enhanced through digital technologies. Mobile phone applications that alert people when they have come into sustained and close contact with a Covid-positive person have been used in many countries in this pandemic, and will be adopted by a number of states, counties, and workplaces in the US.
But an overall skepticism of authority, coupled with the aggressive police crackdown on recent protests, seems to have made people less willing to line up and trust a public agency right now, public health included. In one particularly egregious example, the Minnesota public safety commissioner recently said that the government was “contact tracing” protesters, falsely equating spying on protesters with a vital public health effort. A source with knowledge of contact tracing in Minneapolis told The Verge that contact tracers are being met with more resistance following the unrest.
“In this current environment, which has enhanced or brought forth a mistrust of governmental authority, it might make them disinclined to speak with anyone in government,” Dr. William Schaffner, a professor of infectious diseases at Vanderbilt University, told the Washington Post.
If people can’t be upfront with manual contact tracers and are unwilling to use digital methods, it will severely hamper our ability to combat the pandemic.
“When a segment of the population is so systematically excluded … it becomes really hard to reach out and to be able to have this coordinated response,” Dr. Kathleen Page, one of my Hopkins colleagues who studies infectious disease response, told me.
Historic injustices against Black Americans damage trust even further
In April and May, we watched as anti-lockdown protesters — most of whom were white, some of whom were armed — assembled and berated the police, with no response. Recent anti-racist protests, by contrast, have produced scenes of horrific violence on the part of police, particularly against black protesters.
The egregious double standard on display is not just a police problem: A whole host of American public institutions treat their Black citizens worse than their white ones. Historically, public health is no exception. Police violence is likely to activate this historical memory in Black communities in ways that make them less likely to trust the Covid response, particularly as it relates to attitudes toward surveillance and medicine.
There is a long track record of targeted surveillance and smears of racial justice activism by law enforcement, which has included the surveillance of civil rights movement leaders such as Ida B. Wells, W.E.B. Du Bois, Martin Luther King Jr., and Malcolm X. These abuses, combined with police violence, have fostered substantial distrust of surveillance among African Americans.
Then there are the historical injustices perpetrated by the medical establishment in the United States that have done considerable damage to its relationship with African Americans. In particular, it is difficult to overstate the impact of the infamous Tuskegee syphilis study on contemporary distrust among African Americans in the US health system.
Beginning in 1932, purportedly to study the course of the syphilis infection, the US Public Health Service and the Tuskegee Institute began recruiting hundreds of African American men with and without syphilis. Participants were not informed about the study protocols or how to withdraw from the study, nor were they provided penicillin when it became the accepted treatment in the late 1940s. By the time the study was publicized and halted in 1972, many had needlessly died due to contracting syphilis without treatment.
The resulting distrust from this tragedy has had lasting effects on African Americans, from vaccine hesitancy to a resistance to visiting a doctor or participating in clinical trials. One study found that 27.7 percent of African American respondents expressed high “values distrust” in the health care system — meaning that they question the honesty, motives, and equity of the system — in contrast to 18.7 percent of white respondents.
Negative experiences and mistrustful attitudes of law enforcement and medicine are connected in important ways. A recent study found that people who have negative encounters with the police are more likely to mistrust medical institutions. Since Black Americans are more likely to have negative encounters with the police, the impact of this association is disproportionately felt by this population.
Now, the coronavirus, the protests, and a longstanding fear of police have collided at a time when Black Americans are in dire need of trustworthy medical services.
Black Americans are considerably more likely to contract Covid-19, to be hospitalized, and to lose their lives to the disease. For example, data from New York City showed that Covid-19 death rates for African Americans (92.3 deaths per 100,000) were more than double that of white people (45.2 deaths per 100,000). This is occurring on top of the existing racialized health disparities — African Americans tend to receive lower -health care, are more likely to die from cancer, and are more likely to develop a host of chronic diseases — that make the life expectancy of African Americans significantly shorter than that of white people.
And if, in this pandemic, public health officials can’t figure out a way to reach Black Americans, and protesters in particular, the failures of contact tracing could be another example of how racism has led to poor health outcomes for Black Americans.
What can be done to rebuild trust
Public officials need to work to reestablish the trust that has been corroded by centuries of abuses and injustices. To help with contact tracing in particular, it is important to build safeguards into any contact tracing effort, manual or digital, so that everyone can feel comfortable sharing their personal information with public health.
For example, Congress should pass legislation to bar law enforcement and Immigration and Customs Enforcement from accessing contact tracing data. Several data protection bills that apply to the pandemic are under consideration in Congress right now, and none explicitly contains such prohibitions (although there is some language in one of the bills that might limit access to digital contact tracing data by some federal agencies). This needs to be fixed.
Such a statute isn’t just important for Black communities. Dr. Page, my Hopkins colleague who works with Latino communities, believes that rules prohibiting ICE from accessing contact tracing data are vital to the success of the endeavor. “I really think that the most important thing is explicitly stating, and having the right protections, to make sure that this information would not be shared with authorities, and only for public health purposes,” she says. Reassuring communities that their information will not be misused is essential in order to get people to pick up the phone or download an app.
Still, such safeguards aren’t likely enough to build trust after so much erosion. And given that people are being discouraged from bringing their phones to protests at all because of the potential for law enforcement to weaponize their data, digital contact tracing may not be very useful.
But public health agencies can train their contact tracers in these fraught histories to help them to do what Shreya Kangovi, an associate professor of medicine at the University of Pennsylvania, describes as “culturally competent contact tracing.” Members of these communities should be involved in contact tracing initiatives at every stage, so as to foster trust and inclusion.
Public health agencies around the country should also be working with trusted community organizers to spread the message that getting tested is important, and to build trust that private information will not be misused. In New York City, they have clearly determined that not asking people at all about whether they have been to a protest is one way to limit suspicions that public health agencies are acting in concert with law enforcement.
Ultimately, systemic racism has undermined trust in our institutions when we need them the most. This is especially true for Black Americans, who have disproportionately been harmed by those charged with protecting them. Considerable damage has already been done, but it is not too late to take steps toward repair.
Katelyn Esmonde, PhD, is a Hecht-Levi postdoctoral fellow at the Johns Hopkins Berman Institute of Bioethics. She was in the core writing group of the book Digital Contact Tracing for Pandemic Response: Ethics and Governance Guidance, published in May 2020 by Johns Hopkins University Press.
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Author: Katelyn Esmonde
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