Skip to Content

CRISPR could help us cure sickle-cell disease. But patients are wary.

How accessible would a cure be to the people who need it?
September 18, 2019
Micrograph of sickle cells
Micrograph of sickle cellsWikimedia commons

A gene-editing technique that has shown promise as a potential cure for sickle-cell disease is now being tested in humans. But if it works, will the people who need it even be able to get it? Now that a cure may be in sight, this is an urgent question, says Vence Bonham, a senior advisor to the director of the National Human Genome Research Institute.

Sickle-cell disease (SCD) is a genetic blood disorder that affects millions of people in the world. It causes the production of abnormal red blood cells and can lead to intense pain, strokes, and organ and tissue damage. 

From a scientific perspective, “it’s an exciting time” for people who suffer from the disease, Bonham said today at MIT Technology Review’s EmTech conference. Researchers are testing a technique that uses the precise gene-editing tool CRISPR to modify a single gene associated with the disease.

Vence Bonham
Justin Saglio

But from a sociological standpoint, argued Bonham, the work is just beginning. SCD is more common in certain ethnic groups, particularly people of African descent. And while there are around 100,000 people with the disease in the US, the vast majority live in sub-Saharan Africa and India, Bonham said. 

He and colleagues recently conducted a study intended to explore the “attitudes and beliefs” toward the promising technique held among people with SCD, their family members, and their physicians. Many of the people Bonham and his colleagues spoke with expressed skepticism that a potential CRISPR-based cure would be affordable and accessible to those who need it. Although they did find “renewed hope,” they also observed “cautionary, apprehensive undertones to this hope,” which they concluded stem in part from decades of “medical disenfranchisement of the SCD community.”

According to one physician interviewed for the study, there is a danger that other rare diseases that tend to affect people “with more resources” might get more attention and, potentially, funding. As a result, there is a concern that the SCD population “could get left in the dust.” This population is already skeptical, since “they have been left in the dust with so many other things,” the physician added.

Besides a cure itself, we also need better and cheaper ways to “expand the benefits of this new technology,” Bonham said. “The potential is great, but we must ask the question: Who will benefit?”

Deep Dive


How scientists want to make you young again

Research labs are pursuing technology to “reprogram” aging bodies back to youth.

Human brain cells transplanted into baby rats’ brains grow and form connections

When lab-grown clumps of human neurons are transplanted into newborn rats, they grow with the animals. The research raises some tricky ethical questions.

Inside the billion-dollar meeting for the mega-rich who want to live forever

Hope, hype, and self-experimentation collided at an exclusive conference for ultra-rich investors who want to extend their lives past 100. I went along for the ride.

The debate over whether aging is a disease rages on

In its latest catalogue of health conditions, the World Health Organization almost equated old age with disease. Then it backed off.

Stay connected

Illustration by Rose Wong

Get the latest updates from
MIT Technology Review

Discover special offers, top stories, upcoming events, and more.

Thank you for submitting your email!

Explore more newsletters

It looks like something went wrong.

We’re having trouble saving your preferences. Try refreshing this page and updating them one more time. If you continue to get this message, reach out to us at with a list of newsletters you’d like to receive.