CRISPR, a gene editing technique that is used as a tool to fight diseases like cancer, sounds dystopian to a lot of people. Editing human genes brings up eugenics fears and images of human test subjects, not least of all in communities with a history of medical abuse. For the Black community, medical abuse has a long, ingrained history, from experiments on enslaved women to the Tuskegee experiments to Henrietta Lacks. Couple that with the fact that medical racism is far from a thing of the past, and the distrust runs deep, not least of all when it comes to breakthrough research.
Dr. Eric Kmiec, director of the ChristianaCare Gene Editing Institute (GEI), has been intentional about focusing on equity in his work, including using CRISPR research to fight health inequity with COVID-19.
A new CRISPR initiative tied to ChristianaCare’s CRISPR in a Box laboratory exercise for high school and college students is taking on sickle cell disease, which can be fatal and primarily affects people of African ancestry, with about one out of 365 Black Americans inheriting the disease.
Kmiec, speaking during a virtual media briefing on the latest in CRISPR research, was straightforward:
“CRISPR can cure sickle cell disease,” he said. “This is a very forward-thinking statement. There are excellent groups around the country we’re working hard on it, and we’re one of them.”
The new CRISPR in a Box initiative aims to get Black students on the high school and college level involved as researchers, in the hopes that, as CRISPR becomes more and more inclusive on the medical side, trust in their work will build, and sickle cell disease will have a cure.
“The program not only talks about gene editing using CRISPR in a Box to demonstrate, but also — why has sickle cell disease remained uncured?” Kmiec asked. “Why is there discrimination against underserved populations? Is it because these diseases don’t affect the mainstream culture? We’re going to engage in those kinds of conversations.”
CRISPR in a Box, developed at ChristianaCare with Delaware Technical Community College (DTCC) and licensed to Pottstown, Pennsylvania’s Rockland Immunochemicals, guides students through a gene-editing experiment.
“That in itself was a wonderful achievement, we think, and most of the credit for that is with our partner DTCC,” Kmiec said. “They helped educate us on what a a successful product would look like.”
The program is moving forward, funded internally by ChristianaCare, though Kmiec notes that they may eventually need to raise funds at the production stage, as well as for outreach efforts, which could potentially include a partnership with the Black-owned local television network DETV.
“At the end of the day, GEI is committed to developing CRISPR as a therapeutic, but also developing the community and the patients who would receive it by increasing their trust and their understanding that this might actually be something that they can help achieve,” said Kmiec. “Our message to the high school and college students is to come join us in a fight against sickle cell disease. We’re going to give you the ammunition to accomplish it but we need your help, and, most importantly, we need your perspective.”
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