As the Covid-19 pandemic has laid bare the racial inequalities in the United States’ health care system, entrepreneurs in genetic research are speaking out about the importance of encouraging community outreach to combat those disparities and increasing diversity inside their own industry.
An important first step in the battle is for industry leaders to acknowledge the foundational events that seeded the distrust many communities of color harbor today towards medical research, Tshaka Cunningham, co-founder and chief scientific officer of TruGenomix, said Thursday at a STAT Summit panel with Anne Wojcicki, chief executive of 23andMe, and Tony Coles, chief executive of Cerevel Therapeutics.
“You talk about the African American community, there are psychological scars there with regard to the health care system going all the way back to Tuskegee,” Cunningham said, referring to the infamous research studies from 1932-1972 that purposely left Black men with syphilis untreated in order to observe the progression of the disease despite the existence of lifesaving interventions.
“We have to repair that,” he added.
One way to heal those historic wounds, Cunningham said, is through the work of “honest brokers,” or members of those communities who are knowledgeable about science and medical research and capable of sharing their insight authentically and authoritatively with their neighbors.
As a member of the Faith-based Genetic Research Institute, Cunningham goes into communities of color and predominantly African American churches to talk with people about genetics, genomics, and testing. Cunningham, who has served as a deacon at Alfred Street Baptist Church, is in a unique position to educate others about the benefits, risks, and ethics of genetic research and clinical trials.
“I’m a trusted source of information,” he said. “I’ve become an honest broker for the community about what is genomics, what is health, what is this technology.”
Cunningham said he wants to create an army of honest brokers whose job is not just to reach out to the community, but also to advocate for fixing problems with clinical trials. Historically those issues include a lack of transparency or commitment to ensuring that the communities where the tests are being conducted have access to the results of the work.
Sometimes that means bringing non-minority scientists into the community to share their insights, like how Cunningham once brought George Church, a Harvard geneticist, to church with him to have a dialogue on genetics and health.
By being involved in outreach in Black and brown communities, he said industry professionals can then better advocate for these populations in the boardroom and beyond.
“This philosophy of honest brokers [is] making sure people of color are not only just at the table,” said Cunningham. “We’re eating, we’re determining what’s on the menu, we’re determining what’s being served, and we’re cooking, too.”
That mindset reverberates within the decision-making aspects of his business’s research endeavors. His company, TruGenomix, has developed an assay that uses genetic data to assess a patient’s risk of developing PTSD.
“Diversity’s literally in our DNA, because there’s no way I’m doing a study that’s just European folks because I want it to apply to everybody,” he said.
Coles, who also serves as Cerevel’s board chair, echoed Cunningham’s sentiments, saying that business leaders in health care can’t sit within their four walls without engaging with communities of color and addressing issues like the lack of minority representation in clinical trials.
“Unless you’ve got diverse representation around the table, we are clearly going to miss something in the conversation and in the planning of our work as business leaders,” Coles said. “There are no two ways about it.”
He brought up the example of designing clinical trials to treat psychiatric disorders such as schizophrenia. Coles noted that Black people may be overdiagnosed with schizophrenia, even though it isn’t clear whether the prevalence of the condition is actually disproportionate in that population. Someone designing such a trial, he said, needs to ask whether these diagnoses are legitimate — or potentially the result of societal bias.
At a time when the nation is reckoning with racial injustice at all levels of society, Coles said, it is crucial for business leaders to lean into this moment and reflect on improving representation internally, like through hiring and diversifying their C-suite.
Wojcicki, CEO and co-founder of 23andMe, agreed. “There’s no opportunity to say ‘Oh yeah, we’re gonna hire diversity’ and then you don’t hit that goal. It has to happen,” she said. “Every single hire coming down the pipeline has to include diverse candidates, there’s no opportunity for an excuse.”
Wojcicki, whose company in June did not have a Black employee that was at director level or higher, said she reflected on the lack of racial representation in her own company’s management, admitted there were problems, and made changes. Following the events of George Floyd’s death this summer, her company issued a statement saying they were “part of the problem” on racial inequality. At the summit, she said her company recently hired L. Okey Onyejekwe Jr. as its vice president of health care operations and medical affairs and that it would commit to hiring a Black woman as its next board member.
“If you don’t have that representation, and you don’t have an honest broker,” said Wojcicki, “how is it that I can actually represent other opinions and other views?”