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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.”
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.