CRISPR could end sickle cell disease, but signing up black patients for clinical trials will be a hard sell
The 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. But the long and ugly history of unethical experimentation and mistreatment of black patients could make recruiting volunteers to try largely untested CRISPR therapies a tough sell.
“You can’t expect this population is just going to stick out their arm for an IV,” said Mary Brown, who heads the Sickle Cell Disease Foundation of California and has worked with patients for four decades. “There’s a lot of education that needs to be done. I don’t want to say hand-holding, but that’s what it is.”
Brown had just come from the funeral of a 37-year-old man with sickle cell she’d known since he was 4. “This is a disease where people have not taken any time, where people have been treated with no sense of empathy. Those kinds of things don’t make you trust the system.”
Clinical trials of could start as soon as this year, and some scientists leading those efforts are beginning to lay the groundwork. They are meeting with leaders of black churches and creating teaching
