Reluctance to share information about coronavirus infections or contacts seems to run deep in the US — all the way to the White House, where an investigation into the spread of the virus there was called off soon after the outbreak was discovered.
According to results from a survey released Friday by the Pew Research Center, 41 percent of adults surveyed said they would be “not at all” or “not too likely” to talk to a public health official by phone or text message about the coronavirus.
The survey of more than 10,200 adults from the nationally representative American Trends Panel was conducted in mid-July, and its results align with earlier findings and anecdotal reports of contact tracers unable to reach or extract information from many individuals they tried to get in touch with.
“We get a variety of responses, from yelling and hanging up to those telling us that they have already contacted all of their friends and will not give us those names,” Jen Freiheit, the health director of Kenosha County, Wisconsin, told Reuters this summer.
To help reduce the spread of the coronavirus, which can be most infectious in the days before someone feels sick, contact tracers first reach out to people who have tested positive to advise them to isolate and to obtain the names of people they might have been in close contact with during their infectious period, including the two days before they started feeling symptoms. Contact tracers then try to reach these people to instruct them to quarantine so they do not spread the virus to others in case they have contracted it.
The Pew survey found that people who were more familiar with contact tracing in general reported being more likely to participate. Of those who had heard “a great deal” about contact tracing, 63 percent were “very or somewhat comfortable or likely to” comply with contact tracing — compared to 29 percent of people who were “not at all” familiar with it or 35 percent who had heard “not too much” about it.
Other challenges in getting people to participate in contact tracing are habit-based. Much of this work is currently being conducted by phone, but 80 percent of respondents said they do not answer the phone if they get a call from an unknown number. Those ages 18 to 29 were most likely (25 percent) to say they would answer a call from an unknown number. This group, though, was also the least likely to say they would talk with a contact tracer, with nearly half of them (49 percent) saying they were not at all or not too likely to do so.
Willingness to help with contact tracing also followed political party affiliation to some extent, Pew found. About two-thirds of Democrats said they would be likely or somewhat likely to talk with a contact tracer by phone or text, but only about half of Republicans said they would.
Why are people in the US so reticent to help contact tracers, thus undermining a key strategy for stopping the spread of the virus? Many seem to be concerned that somehow their data will be compromised. About 40 percent of poll respondents said they were “not at all confident” or “not too confident” that public health organizations could “protect their records.”
Others are unclear about what contact tracing entails or that a public health official asking for their name and date of birth is really who they say they are. And many people of color are justifiably mistrustful of public health workers and the medical establishment after centuries of embedded racism and unethical experimentation.
“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,” Kathleen Page, an infectious disease specialist at Johns Hopkins University School of Medicine, told Katelyn Esmonde, a researcher at the Johns Hopkins Berman Institute of Bioethics, in a June piece for Vox.
The difficulties in effective contact tracing, however, do not lie entirely on the shoulders of those screening calls or hanging up on tracers. Although states have been scaling up the number of contact tracers they have on staff, the country still does not seem to have enough overall. A recent survey conducted by the Johns Hopkins Center for Health Security and NPR found that there are now more than 50,000 contact tracers in the US, but that is just half the number experts have suggested we need.
And this sort of effort is incredibly labor-intensive, as Jahnavi Curlin, a volunteer contact tracer, wrote for Vox in early October:
“We are not permitted at any time to share privileged health information, but contact tracing requires that individuals be notified of exposure to a confirmed case. It is almost like playing a reverse game of Clue, where you as the tracer know the time, the place, and the person, but you are never allowed to say it directly.”
Unlike many other countries, the US has been relying on manual contact tracing instead of widespread apps. More than a dozen states, however, have now rolled out Apple’s Exposure Notification System, which uses Bluetooth to detect possible contacts. It was launched, for example, to Colorado iPhone and Android users last weekend, notifying them they could opt into the program. The state hopes that even just 15 percent of people will participate.
At that level, a September preprint study found that new infections could be reduced by 8 percent and deaths by 6 percent. Other research looked more closely at the technology (at least as it worked in a commuter light rail car) and cast doubt on the efficacy of Bluetooth distance detection to be a reliable source for contact tracing data, at least by some European countries’ standards.
And when coupled with results about people mistrusting the security of their data and 50 percent of Pew respondents saying they are not at all or not very comfortable sharing the location data from their cellphones with a local health official, whether or not these apps end up being a major tool in fighting the pandemic in the US remains to be seen.
Some, like public opinion reporting company Ipsos’ president of US public affairs Cliff Young, chalk up the general reluctance to contribute to an ethos of individual control over personal information — even if that information could help prevent further illnesses or deaths. He sees centralized contact tracing efforts as essentially counter to the concept of individual liberties, as he noted in Axios earlier this year.
In the meantime, in an effort to take some fuel off the pandemic’s latest nationwide flare-up, it might be an excellent time to add a fourth “W” to the standard list of three: wear a mask, wash your hands, watch your distance — and work with contact tracers.
Katherine Harmon Courage is a freelance science journalist and author of Cultured and Octopus! Find her on Twitter at @KHCourage.
Millions turn to Vox each month to understand what’s happening in the news, from the coronavirus crisis to a racial reckoning to what is, quite possibly, the most consequential presidential election of our lifetimes. Our mission has never been more vital than it is in this moment: to empower you through understanding. But our distinctive brand of explanatory journalism takes resources. Even when the economy and the news advertising market recovers, your support will be a critical part of sustaining our resource-intensive work. If you have already contributed, thank you. If you haven’t, please consider helping everyone make sense of an increasingly chaotic world: Contribute today from as little as $3.