Building Trust to Ensure Effective and Ethical Contact Tracing in Communities of Color
Covid-19 cases and deaths in the United States have exposed deep-seated racial inequalities, such as unequal access to health care and insurance, exacerbated by economic disparities. There is currently no effective treatment or reliable vaccine for Covid-19. Without such a tool, the world is left with the same approaches public health workers have used since the nineteenth century: contact tracing and quarantines. Contact tracers work with individuals who have tested positive for an infectious disease and notify people with whom they have come into contact that they may have been exposed. They also provide information and support on the steps those exposed should take. In the case of Covid-19, those steps include getting tested and, as appropriate, entering quarantine.
Contact tracing is one of the best tools the world currently has to combat the coronavirus pandemic, yet in communities of color this practice faces complex challenges. The many contact tracing efforts conducted domestically and abroad over the last few decades have shown that trust is vital for these efforts to be successful. Many communities of color have faced a long history of discrimination, mistreatment, and exploitation by public health officials. Eugenics programs led to as many as 70,000 forced sterilizations of Black and Latino Americans throughout the twentieth century. The Tuskegee Study denied Black men treatment for syphilis over the 40-year experiment, until 1972. Building trust will need to be a priority, as communities of color—particularly Black, Latino, and Native American communities—are disproportionately impacted by the Covid-19 epidemic. Black and Latino Americans are three times as likely to become infected with Covid-19 as white Americans and nearly twice as likely to die from the virus. People of color are also much more likely to require hospitalization due to Covid-19 than white people. As of June 12, Native Americans and Black Americans were hospitalized at a rate five times that of white persons, and Latino Americans were hospitalized at a rate four times that of white Americans. As of late April, the Navajo nation had the third highest rate of Covid-19 per capita in the United States, after New Jersey and New York. Given the disproportionately high rates of Covid-19 among these groups, the importance of building trust in these communities will also be critical for vaccine success, as these same issues are central to successfully enlisting volunteers from communities of color to participate in vaccine trials.
This excessive burden is in part due to higher rates of chronic diseases in communities of color, which may exacerbate Covid-19. For example, in 2018, 14.7 percent of Native American adults, 12.5 percent of Latinx adults, and 11.7 percent of Black adults were diagnosed with diabetes, compared to only 7.5 percent of white adults. That same year, Black Americans were 1.5 times more likely and Latino Americans 2.5 times more likely to be uninsured than White Americans, making it more difficult to keep chronic diseases under control. People of color are also overrepresented in many frontline industries. Latinos represent 40.2 percent of cleaning services employees, Black people represent 19.3 percent of childcare and social service employees, and non-white people represent 56.7 percent of bus and transit drivers. People working in these careers are often unable to adequately socially distance and cannot work from home, increasing their possible exposure to Covid-19.
Current public health officials and political leaders can learn from the lessons of contact tracing efforts over the last several decades. Shortly after World War II, a team of extensively trained contact tracers were deployed to address a spike in syphilis cases, eventually bringing cases down to the lowest they had ever been in the United States. Contact tracing and vaccination enabled the World Health Organization to declare smallpox eradicated in 1980. Contact tracing was a key tool in ending the 2014 Ebola outbreak in Liberia. HIV contact tracing, also known as partner notification or index testing, is a mainstay in HIV programming domestically and abroad. In each of these instances, contact tracing was most successful when there was sufficient trust established between the community and the public health system. Contact tracing requires that people are willing both to provide personal health information to contact tracers and take action based on the advice provided. While contact tracers do not need extensive medical training, they do need some level of skill training and guidance in how to win the trust and confidence of their clients.
Emphasizing personal privacy and supporting extra protections for data collected during this unprecedented time will be crucial to building trust in these communities. To accomplish this, contact tracing efforts should make protecting civil rights central to outreach. Many concerns have been raised about the possibility for misuse of private data collected by contact tracers. In the United States, data could be used by law enforcement to prove an individual’s whereabouts or sensitive data could be made public, leading to discrimination and stigma. In South Korea, a cluster of Covid-19 cases was linked to nightclubs popular with gay men. There is widespread stigma against the LGBTQ community in South Korea, and this latest cluster is stoking homophobia and fears that people will fail to get tested to avoid being associated with these clubs. Contact tracing in South Korea functions under a robust legal framework, which, among other protections, requires the government to delete individuals’ data once tracing efforts are completed. These data protections are essential to protect individuals but unfortunately have done little to curb the fear and stigma around this specific cluster.
Close involvement of community-based organizations in contact tracing will also be core to success. HIV efforts have long run services out of community centers, such as churches, and involved community leaders in sharing knowledge and advocating for community participation. Additionally, involving affected communities in planning and implementation will ensure communities participate in public health efforts. Some cities have begun offering Covid-19 testing at Black churches to address disparities. Efforts like these should also be used for safety measures, such as stay-at-home orders. Enlisting community leaders to promote safety measures will positively promote the uptake of such behaviors. In the Ebola outbreak of 2014, faith leaders were crucial to the local response. Health workers enlisted these leaders—who were trusted sources of information—to go door to door promoting behavior change. Here in the United States, involving trusted community members in promoting social distancing, mask wearing, and quarantining will be critical for communities to embrace these behaviors, and yet many places are relying on fines to enforce these activities. When stay-at-home orders were instituted across the United States in April, Black people were four times as likely to be charged with violating stay-at-home orders as white people, fueling the perception of systemic bias.
Providing financial subsidies to those needing to quarantine will be another important ingredient for effective contact tracing. An April survey showed that 61 percent of Latino Americans and 44 percent of Black Americans reported that they or someone in their home had lost their jobs or wages due to Covid-19, compared to only 38 percent of white adults. This same survey reported that 73 percent of Black adults and 70 percent of Latino adults did not have enough funds to cover three months of expenses, compared to 47 percent of white adults. During the 2003 SARS outbreak, average annual household income fell by 22 percent, while health care spending increased, devastating many families financially. Without financial protections in place, most Americans—but especially those at an economic disadvantage—will be less willing to get tested if they believe it will lead to a loss of income. Providing a safety net for those most vulnerable will contribute to increasing uptake of testing and help prevent more inequity in the impacts of the pandemic.
As of the end of July, 41,122 workers had been hired as contact tracers in 45 states and Washington, D.C. Estimates for the number of contact tracers needed in the United States range from 100,000 to 300,000. Currently each state has different requirements to become a contact tracer. The Centers for Disease Control has a Contact Tracing Training Plan available on its website, which includes implicit bias training and cultural competency trainings. This plan is only a sample training plan though, and none of the courses are required on a federal level. The training that New York state is using—the six-hour Johns Hopkins Bloomberg School of Public Health course—only includes one hour of content on interviewing techniques. Aligning the contact tracing curricula across the county to require implicit bias training and cultural competency trainings and emphasizing interviewing techniques will be important to producing effective contact tracers.
In order for contact tracing to be effective and ethical, earning the trust of communities will be essential. U.S. political and public health leaders should make respect of civil rights central to outreach, enlist community-based organizations and community leaders as active partners, and provide financial subsidies to those in need who require quarantine. These are the hard-earned lessons from decades of experience.
Margaret V. McCarten-Gibbs is a program manager with the Global Health Policy Center at the Center for Strategic and International Studies (CSIS) in Washington, D.C.
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