Why Using Cellphones To Trace The Pandemic Won't Save Black Lives

Privacy

from the connecting-the-pandemic-to-the-protests dept

Caught between COVID-19 and cop violence, and now risking their health to protest these conditions, Black communities need a comprehensive anti-racist public health response to this growing pandemic. Instead, some U.S. states are investing in apps to contain the virus.

George Floyd died, unable to breathe, with Officer Derek Chauvin’s knee pressed into his neck for almost nine minutes. According to the full autopsy report released by the victim’s family, Mr. Floyd had also tested positive for COVID-19 weeks prior to his death. While Mr. Floyd was asymptomatic and the virus was not a contributing factor in his death, thousands of Black people throughout the United States have died, breathless—collateral damage in a double pandemic that has taken too many Black lives. COVID-19 has sickened at least 1.9 million people and killed more than 100,000 in the U.S., the highest death toll across the globe. Black people are disproportionately represented in both the number of infections and the number of deaths.

To contain the viral pandemic, cities and counties across the U.S. are adopting something called Technology Assisted Contact Tracing (TACT), using cell phone apps as a means of identifying people diagnosed with COVID-19, notifying people who have been in contact with them of possible exposure to the disease, and advising them of protocols to limit the spread of the virus.

I talked to a Bay Area nurse who conducts coronavirus contact tracing, and she described how understaffed, committed teams of medical professionals and others are working tirelessly to find sick and potentially sick people. As the President quickens the pace of “re-opening” the economy, public health experts have insisted that dramatically increasing U.S. capacity to implement contact tracing is a necessary step. But the costs and dangers, especially to Black and other underserved communities, may be greater than the benefits.

In many cities, massive manual contact tracing efforts are underway, engaging nurses and other medical staff, as well as laypeople, in making thousands of phone calls to identify, notify and educate people who may be infected with COVID-19. Contact tracing is considered a basic practice in epidemiology. Digital contact tracing is intended to accent these sorely needed existing manual contact tracing efforts, making them less expensive, and more effective and efficient.

But digital contact tracing or ‘TACT’ is not just a neutral scientific project. There are some real limitations to the technology that render it potentially ineffective and possibly harmful in Black, Latino and Native communities, and amongst low-income or homeless people. Some experts say at least 60% of a nation’s population must participate as app users for it to work. But, those hardest hit by the virus may also be least likely to have the access and means to use the apps.

What Exactly is Digital Contact Tracing?

Here’s the simple version for non-techies like me: Proximity tracing apps are a way to figure out if two people were in the same location at the same time. Proximity tracing involves using bluetooth detection, GPS tracking, or a hybrid of the two. This proximity detection capacity is powered by either the bluetooth detection framework that has recently been added to smartphones by both Google and Apple, or by existing GPS tracking.

Cell phone users download an app with a GPS-based location logger or proximity detection capacity. When a person is confirmed by a medical professional as having COVID-19, a medical provider certifies the diagnosis, and the infected person’s GPS data or proximity tokens are uploaded to the app’s server. People could indicate on the app, provided by public health officials with an opt-in by the user, that they’d been infected. Those who’d been nearby would receive a notification so that they could self-quarantine or, ideally, seek a diagnosis.

On its face, this kind of cell phone based proximity detection and notification system sounds really good, simple and necessary. As a person who grew up watching my mother suffer and die from sickle cell anemia and then my wife and friends suffer and die from cancer, I know what it is to be desperate for a way to avoid the tragedy of dying in a hospital alone. But, as global climate change and inequality exacerbates existing societal fractures, we have to decide as a nation whether our use of digital technologies will expand government surveillance, as digital contact tracing apps do, or shrink it.

App Inequity

A Pew Research Center survey from 2019 found that Blacks and Latinos are more likely than whites to use a smartphone for a broader range of activities, but these communities and lower-income smartphone users are about twice as likely as whites to have canceled or cut off service because of the expense. That same study found that some 19 percent of U.S. adults do not have smartphones—a proportion that rises to 29 percent among those in rural areas, 34 percent among people who did not graduate from high school, and a staggering 47 percent among people over the age of 65.

These proximity notification apps work on smartphones and could use a tremendous amount of someone’s data plan. Signal strength and availability of Internet WiFi is another major challenge, since these apps could require a fairly robust data plan. Using a large amount of data also often requires Internet access, yet more than 21 million Americans don’t have access to high speed Internet.

What’s more, the apps’ ability to recognize proximity means that the app can tell if two people are close to each other, but cannot target with enough specificity to tell whether or not there is a wall, or PPE between them. This can lead to false positives, especially in densely populated areas. In addition, though one person may have the app, if the person beside them does not, the app can produce false negatives by failing to identify a potentially infected person. In both of these scenarios of dense population and sporadic app availability, we can imagine how Black communities would be disproportionately impacted by the technology’s limitations.

Inequity = Ineffectiveness

These equity barriers mean the apps just won’t be as effective as they are designed to be.

For these apps to work, there are multiple decision points that create a barrier to use. A person has to download the app. Then they must disclose medical information. Finally, they must choose to quarantine and follow public health recommendations provided by the app or a follow up health provider.

At each point, equity challenges — from the disproportionate representation of Black and Latino workers performing front line essential services to crowded and substandard housing — lessen the likelihood of Blacks and Latinos voluntarily using and therefore gaining benefit from proximity notification apps.

Suspicion of public health workers and the medical establishment as a whole may be one of the most significant barriers to Black and Latino participation in digital contact tracing, despite the disparate impact of COVID-19 on these communities.

African Americans represent about a third of deaths from the COVID-19 pandemic, and 30% of known coronavirus cases, though they comprise only 13% of the U.S. population. Black people are hospitalized for coronavirus complications at three times the rate of white people. In 21 states, Blacks are dying at substantially higher rates. This trend of disproportionate Black dying, while associated with a new virus, has a long and painful history. Since the trans-Atlantic slave trade began in the 1600’s, Black people in the Americas have been deprived of quality food, housing, health care, clothing and all the things a person needs to remain healthy.

At the same time Black people live under extraordinarily stressful conditions, from recurring police violence and over-policed communities, mass incarceration, employment and educational discrimination and so much more. As a result, Black bodies have become more susceptible to conditions like heart disease and diabetes. Black people are more likely to die from all types of cancers.

Despite evidence that generational deprivation caused by systemic white supremacy has had a powerful hand in creating these racial health disparities, Black people are consistently blamed for their poor health outcomes and for their disparate rate of death from coronavirus.

From U.S. Surgeon General Jerome Adams? recent remarks in the press that encouraged Black people to ?take better care of themselves? to prevent COVID-19 deaths?to President Trump?s recent suggestion that protests for Black civil rights caused a spike in coronavirus rates, the White House is pointing fingers at Black communities that should be pointed at America?s broken health care system. Latinos also comprise a greater share of confirmed cases than their share of the population, and share similar health disparities. The Navajo Nation has been hit especially hard.

Black people are not only blamed for the durability of this virus, they are also punished for it. Ninety percent of people arrested in encounters related to social distancing in New York City have been Black or Latino, and some of the arrests captured on video have been extremely brutal. Arrests are conducted by officers without adequate personal protective equipment, and those arrested on a charge of failing to adequately social distance end up in jails where social distancing is impossible. Though it’s clear we can’t police our way out of this pandemic, it seems some cities are committed to continuing to use excessive, brutal and discriminatory policing to enforce social codes.

Blamed for the underlying conditions that make Black people more likely to die from COVID-19, criminalized, left behind by government relief funds and steeped in a history of medical bias and government misuse of personal data—Black communities, alongside Latinos, Native American, lower-income, undocumented and some Asian communities have little reason to trust government contact tracing apps.

The technology only works if federal and state dollars are subsequently invested in impacted communities, appropriate interventions in place. For example, in New Orleans, health officials identified equity barriers in their drive-through testing strategy for the coronavirus. Census tract data revealed hot spots for the virus were located in predominantly low-income African-American neighborhoods where many residents lacked cars. So they changed their strategy and sent mobile testing vans into the community, instead of having the community come to them. But these interventions are few and far between.

Perhaps the biggest effectiveness barrier for Black and other underserved communities is inequity in testing. Testing generates data, and Technology Assisted Contact Tracing apps rely on robust data generated by robust testing. So what happens when Black communities are denied robust testing due to structural inequalities and implicit bias in the medical system?

In April 2020, 30-year-old Rana Zoe Mungin, a beloved Black teacher in Brooklyn New York, died from COVID-19 after twice being denied testing. Under pressure from civil rights groups and public health advocates, cities and states have begun to collect race-based data on who is getting sick and dying from this virus. Right now, race or ethnicity is known in about half of all cases and in 90 percent of deaths. Without adequate testing, there is insufficient data for the apps to track contacts. Without adequate testing, appropriate protection and accessible health care, contact tracing apps do not ease the burden or hardworking public health officials. In fact, under-utilized contact tracing apps may misdirect health care workers and make the job of containing the virus even harder.

Privacy Challenges

While early exposure notification using proximity detection apps could be minimally useful, its potential usefulness does not outweigh another very real threat: spying. These apps are likely to be created by developers who have limited experience with managing privacy concerns and sensitive medical data, yet the privacy parameters will be left to each app developer. An inexperienced app developer with limited privacy and contract tracing background could cause real harm. Though Google and Apple have gone a long way toward managing privacy concerns, not every state is going to use the Google/Apple API.

In the rush to a technological fix, cities and states may overlook what’s needed to protect highly sensitive data being collected and placed in centralized, government run databases. This data needs to be locked down with clear use agreements when governments are entering into contracts with private companies, including app developers and database developers like Salesforce. A patchwork state to state, city to city, approach with no federal privacy standards or use agreements could be a significant threat to user data. It can be really hard to genuinely protect privacy, especially if the political will to protect all users equally isn’t there.

For these reasons alone, Black people have good reason to be skeptical of contact tracing apps. But history provides an even better reason. After the terrorist attacks on 9-11, Americans were told that the Patriot Act, a new Department of Homeland Security, and the Immigration and Customs Enforcement (ICE) were critically necessary. All three came into being in the direct aftermath of those attacks and were deployed domestically during the U.S invasion of Afghanistan. The Patriot Act installed new powers that were supposed to target terrorism, but have since been used to fuel racial profiling, while DHS has fueled a burgeoning system of digital surveillance and multi-state cooperation through the use of fusion centers. We’ve already experienced the way expanded surveillance powers for one purpose can be transferred and used for another.

Right now, the Pandemic is already providing a distraction to dramatic expansions of existing surveillance powers. The US Senate recently failed in its attempt to limit law enforcement agencies’ access to web browsing data without a warrant, which reinforced the government’s expansive surveillance powers. Though it’s clear that facial recognition is not the solution to what is now a public health crisis, controversial tech company Clearview says it’s in talks with federal and state agencies to track COVID19 using facial recognition. Face-scanning systems are already in use or under consideration in the coronavirus response. Tampa General Hospital in Florida recently implemented a screening system that includes thermal-scanning face cameras that look for fevers, sweating, and discoloration. Texas-based Athena Security has been pitching a similar product to grocery stores, hospitals, and voting locations.

The COVID19 Consumer Data Protection Act would require companies to get consent from individuals to collect health information, device information, geolocation, or proximity information. It would also make companies disclose why their data is being collected, how it will be handled, who it will be transferred to, and how long it will be retained. But advocates are concerned it doesn’t go far enough. It certainly would not protect Black app users from the potential pivot from government sponsored pandemic surveillance to police surveillance.

Proximity Apps Must Be Coupled With Comprehensive Public Health Strategies

It’s clear that inequality, not ignorance, is fueling COVID-19 infection rates in America. When racial disparities are coded as biological medical problems caused by the patient, rather than political problems caused by long-standing structural inequalities, it creates a wall of mistrust between patients and providers that is already limiting the success of manual contact tracers. Louisiana has invested millions of dollars, but fewer than half are answering the phone. The same barriers will exist when trying to get people to use an app that wants to track your location and share your medical information.

To contain the virus in Black communities, contact tracing apps have a role to play, but it can never function successfully as a primary solution. It’s clear some states will build their own apps and if they do, they should follow these principles for Technology Assisted Contact Tracing. But instead, cities should strengthen and invest in the human infrastructure for contact tracing and public health that is rooted in relationships and trust. Build small, nurse-led medical teams, and invest in technological solutions that can help bring medicine into people’s homes, reach people on the street, speak to those for whom English is not their first language. Connect people to testing and real services in real time. And if they end up sick, alone and dying — advocate for them in hospitals.

Over-reliance on technology cannot solve massive social problems, but it can create them. An app cannot bridge structural inequalities baked into American healthcare. The effectiveness of the proposed contact tracing apps seem limited comparative to potential negative impacts. If we skip over these disparities, if we pour resources and direct investment toward technical fixes without also repairing what has prevented Black patients from getting the best medical care available, it will be a huge, ineffective and expensive distraction. This may be at least one of the reasons contact tracing apps haven’t really taken off in the U.S. thus far. Some states have invested in the apps, but most still do not and many have no immediate plans to adopt one.

Contact tracing or proximity apps could help limit the spread of the virus among some populations, but without a comprehensive public health agenda, it won’t be enough to save Black lives.

Malkia Devich Cyril is an award winning activist, writer and public speaker on issues of digital rights, narrative power, Black liberation and collective grief; as well as the lead founder and former Executive Director of MediaJustice — a national hub boldly advancing racial justice, rights and dignity in a digital age. After more than 20 years of leadership, Devich-Cyril now serves as a Senior Fellow at Media Justice.

Filed Under: black lives matter, contact tracing, covid-19, george floyd, inequality, pandemic, privacy, racism