Free at-home Covid testing is going to rich and white people in King County
Racial equity is good science, critics say.
This is how it works: A box comes to your house with a plastic-wrapped, Q-tip-like swab, a vial, and a Hazmat baggie.
Swirl the swab inside your nostril, pack it all up, and send it off to the lab.
The coronavirus is infecting people of color and South King County at disproportionately high rates. But the Greater Seattle Coronavirus Assessment Network (SCAN) study is disproportionately testing white people, people with incomes of $150,000 and more, and those who live on Mercer Island and on the Eastside.
In this case, racial equity and adequate representation are a matter of good science, critics say.
SCAN is a way to get tested for the virus for free, from home, without insurance, but it’s also a study tracking the local spread of Covid-19. It’s run by some of the biggest local names in medicine, research and public health, including the team behind the Seattle Flu Study – which identified the first case of community transmission of Covid-19 at the time – and funded by the private office of Bill Gates.
The hazard is that public health and government leaders may base decisions on data that only includes a slice of the population and excludes people most affected by the pandemic.
“If you don't have a representative sample, you can't generalize to the county,” said Dr. Leo Morales, co-director for the Latino Center for Health and a University of Washington professor of medicine. He is not involved with the study. “It would be dangerous and a mistake to use SCAN results to make policy for everyone in the county,” Morales said.
Data from the program have been used to estimate how many people have been infected with Covid-19 over time, Public Health – Seattle & King County Communications Director, James Apa said. Now Public Health mostly uses the network to test people with Covid symptoms, he said, and does not rely on its data to produce further calculations.
“We’re aware of the challenges that SCAN has faced in capturing a fully representative picture of the community, and support their ongoing efforts to expand access to and participation in the SCAN program,” Apa said.
But it’s a missed opportunity as a Covid testing program, said Jiquanda Nelson, a board member of the African American Health Board, who said she’s disappointed by the demographic makeup so far.
At-home Covid testing is poised to help people who don’t have access to transportation, insurance, or nearby healthcare facilities, and may mistrust the medical system or be afraid to get Covid testing in person, she said.
“This was the prime opportunity to really break down a lot of barriers that people from Black, Indigenous, people of color communities have when it comes to having access to health care resources,” Nelson said.
Since the end of March, people have sent SCAN over 31,000 test kits, according to that data SCAN publishes online in real time.
Around 65 percent of the people who ordered the test kits are white, as of end of September, whereas around 59 percent of King County is white. Less than 8 percent of participants were Latino, compared to 10 percent of King County’s population. Less than three percent were Black, compared to over six percent of King County’s population.
Yet, Covid-19 has infected Black people and Latinos at among the highest rates in the county, which are three and four times higher than rates of confirmed Covid among white people in King County.
Since the beginning, the study’s updates have professed the need to include more people of color and people from marginalized communities.
“This is an issue that's very much been on our minds, and I think something that we have been trying to pay attention to,” said Dr. Jay Shendure, one of the leaders of SCAN and a genome sciences professor at the University of Washington.
The study’s online system may represent a barrier for people from underrepresented, low-income and communities of color to participate in testing, Shendure said, because it requires people to hear about the website, find it on their own, and fill out questions to participate.
“There are probably a few different things going on here, but one of them simply may be that, you know, that's not necessarily the best platform to reach certain communities,” he said.
To increase participation, researchers may need to “think outside the box” of their website to reach Spanish-speaking communities in South Seattle, said Morales.
“You probably have to go to the local market, and sit there and ask people,” he said. “And here community health workers, people from the community, would be engaged to do the work so that the people are familiar, look familiar, act familiar, speak the language.”
Trust is an underlying issue, said Meron Girma, president of the UW chapter of the National Society of Black Healthcare Professionals.
Community health workers could build trust and relationships that are lacking between communities of color and medical institutions, she said.
Girma used to work as a research assistant for SCAN, where she translated consent forms and testing instructions into Amharic, a language of Ethiopia.
While translation is needed, Girma said, it’s just the first step to engaging communities of color in programs like SCAN.
“Because it's more than language barriers. It's definitely cultural barriers. It’s stigma. It’s historical issues.”
As it stands, the information this program is collecting may not paint an accurate picture of what’s happening with Covid in communities of color, Girma said.
“It could cause a lot of unknowns, which is very scary to have during a pandemic that's already an unknown,” she said.
Now, the study is working with Asian and Pacific Islander community organizations to distribute test kits directly to people in those communities – including offering on-site testing at a weekly food bank, according to a SCAN spokesperson. (The study has roughly proportional representation from those groups, according to online data.)
On the back end, researchers are tweaking the levers of where test kits get sent by capping participation in certain zip codes and giving priority to close contacts of Covid cases, Shendure said.
As the study moves forward, researchers should be more intentional about talking with leaders from affected communities so the study is representative, Nelson of the African American Health Board said.
“When we don't have people in places of power and decision-making who represent the communities who are the most likely underinvested, and under-resourced, and have the least amount of access, this is the product.”
SCAN’s head research team is a mix of white and Asian-American people, Shendure said. Shendure himself is Indian-American, he said.
“I don't think that necessarily played a role,” Shendure said, though he does see a clear need for better representation from communities of color in research leadership.
“I can't necessarily point to some specific decision that might have gone differently or something like that. But it's a fair point. It's certainly possible that we might have prioritized things differently had we had a different makeup.”