Now, at age 37, free of symptoms, able to be a mom and work a full-time job, [sickle cell patient and CRISPR therapy recipient Victoria] Gray is able to “dream again without limitations,” she said on stage at the [Third International Summit on Human Genome Editing in London]. Her story represents a triumph of CRISPR gene editing, a field of science barely a decade old. It also shines as a beacon of hope to the millions of people around the world living with sickle cell disease — a disorder long subjected to scientific neglect and medical racism. But the fast-approaching reality of a one-time cure for the disease is also forcing the gene-editing world to grapple with tough questions of equity and access.
The thorny question at the heart of two days of discussion: How to prevent this technology from falling into the same traps as every other one that’s come before.
Summit speakers emphasized that technological innovations in engineering and manufacturing aren’t going to be sufficient. Innovation in pricing, payment, and intellectual property will have to be part of the answer too. “It really feels like we need to have a rethink,” said Claire Booth of University College London, in order “to achieve sustainable and affordable access to life-changing gene therapies.”
