Advocacy Groups Express Mixed Views on Embryo Editing
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As Edward Donnell Ivy remembers it, many of the sickle cell episodes he endured in his 20s were akin to headaches or colds: They hurt, but he could still get up and go.
Every so often, though, he would be gripped by pain that left him unable to function. “I can’t go out the house. I can’t leave the bed,” he recalled. Then a college student, he would often wind up in the emergency room and miss weeks of classes at a time. The disease was taking a toll.
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After years of struggling with his symptoms, Ivy found a medication that helped him manage the condition, and the worst episodes faded. He finished college and went on to complete medical school and earn a master’s degree in public health. He landed a job with the National Institutes of Health, where he helped the National Heart, Lung, and Blood Institute develop guidelines for sickle cell treatment.
Eventually, he contemplated having children of his own, which put him in a quandary: Would his kids inherit the condition that had caused him so much pain?
It is a common concern among the millions of Americans who live with genetic disorders, and one that places them at the center of an intensifying debate about whether scientists should edit the DNA of human embryos. Proponents have argued that embryo editing could fill a void for aspiring parents at risk of passing on severe genetic disorders, but critics warn that the technology could usher in an unpredictable new era of human experimentation. Tools for editing DNA are imperfect, as is researchers’ understanding of the roles genes play in shaping human traits; many scientists and ethicists worry that attempts at embryo editing could have unintended consequences that impact humanity for generations to come.
According to Ivy, who is now chief medical officer of the Sickle Cell Disease Association of America, there is more than just science to consider. “I look at my religious background, I look at certain elements of myself,” he said, “and I say, OK, is the risk worth the benefit or the reward?” As someone who has benefited from effective treatments, lived a good life, become a doctor, and worked to tame the disease, he said, he can’t say that it is.
Edward Donnell Ivy, shown here as a high school graduate (left), speaking at the HHS Sickle Cell Disease Summit in 2024 (middle), and in a recent photo (right), is the chief medical officer of the Sickle Cell Disease Association of America. After years of struggling with symptoms from sickle cell disease, Ivy found a medication that helped him manage the condition. He eventually landed a job with the National Institutes of Health, where he helped develop guidelines for sickle cell treatment.<br>Visual: Courtesy of Edward Donnell Ivy
But at least two new startup biotechnology companies, Preventive and Origin Genomics, are betting that others in Ivy’s position will see things differently. The companies have signaled they want to develop strategies that combine gene editing with in vitro fertilization, or IVF, to correct disease-causing mutations in human embryos before they are implanted to begin pregnancies. (Lucas Harrington, co-founder of Preventive, declined to be interviewed for this story; Origin Genomics did not respond to multiple emailed interview requests.)
The controversial commercial push builds on research that, in the U.S., had largely been confined to just a few academic labs. Although the technology is still immature — and effectively banned in the U.S. — proponents are looking to unwind federal restrictions, while suggesting it could be used to address thousands of disorders including sickle cell disease, Duchenne muscular dystrophy, Huntington’s disease, and cystic fibrosis. Meanwhile, preliminary results shared by Columbia University researchers this month suggest that techniques to edit DNA in embryos are gaining precision.
Advocacy groups for people living with these genetic disorders have, for the most part, been quiet on the embryo editing developments. To gauge their views on the technology, Undark reached out to several organizations, including the Sickle Cell Disease Association of...