“Some of my colleagues said, ‘We don’t understand this big drop-off,’” Cunningham said. “I’m like, ‘I do.’ It’s the whole accumulation of things, from Henrietta Lacks to a whole series of negative interactions with the medical community.” (Lacks is an African-American woman whose cancer cells were taken without her consent to create one of the most important cell lines in medical research.)
A 2016 analysis of thousands of genomic studies showed what researchers called “persistent bias:” 81 percent of participants had European ancestry, while people with African, Latin, or indigenous ancestry totaled less than 4 percent.
This lack of buy-in means African-Americans could be left behind as new genetic therapies are developed. “If people don’t avail themselves of these benefits because of the past,” Cunningham said, “then they are letting the evil win twice.”
He sees a need for “honest brokers” — African-Americans like himself who are scientists or clinicians and trusted by their communities — to build bridges between researchers and patients who may benefit from CRISPR-based therapies. But people like Cunningham are few and far between.
“Often I’m either the only African-American or one of few scientists of color in the room,” he said. “This needs to change.”
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