One of the first uses for the buzzy gene-editing tool CRISPR could be a treatment for patients with sickle-cell disease. But the Black community’s troubled history with medical trials and testing could make testing its effectiveness difficult.
In addition to discouragement and anger over the scientific community’s neglect of sickle-cell disease — which predominantly affects Black people — African-Americans still hold ugly historical experiments such as the Tuskegee Study of Untreated Syphilis in living memory. And studies have shown Black Americans’ pain isn’t treated with the same seriousness as other races. As a result, they’ve been historically less likely to take part in clinical trials.
Even for Black scientists themselves, such as researcher Tshaka Cunningham, the distrust can be hard to shake. “Tuskegee left a psychological scar for many African-Americans, myself included,” he said. He told STAT News that until what’s broken is repaired, the problem could only get worse:
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 … then they are letting the evil win twice.”
Clinical trials on the new CRISPR sickle-cell technology could start as early as next year, and scientists are doing groundwork, meeting with community groups and churches in African-American communities. STAT has the story on the gene-editing therapy … and the efforts being made to get it to the people who need it most:
he first attempts to use a groundbreaking gene-editing technology in people will likely target patients with sickle cell disease, a crippling inherited disorder that in the U.S. predominantly strikes African-Americans. That should be welcome news, after decades of sickle cell patients being neglected by the health care system, scientists, and drug companies.