On the eighth night of Hanukkah last year, Barry Honig saw light. He could see the shape of the menorah, the flames like fuzzy buds at the top of long sticks.
Honig hadn’t been able to see a menorah for 20 years. In his younger years, he could discern a brunette from a blonde or see the sun shimmering on a lake. But by his thirties, his ability to see detail had started to fade.
He was born with a retinal disorder called Leber congenital amaurosis (LCA). Inside his eyes, photoreceptors, the cells responsible for translating light, were dying off. It was as though someone had put a dimmer switch on his whole field of vision and dialed it way down.
In the spring of 2020, a friend mentioned a neurologist named Sheila Nirenberg, who was running a clinical trial that might restore vision in people with retinitis pigmentosa (RP), the greater category of disorders that LCA falls within. Honig emailed Nirenberg immediately.
Within minutes, Nirenberg replied: “What is your eye condition? Have you ever seen? Do you have sight? How much can you see?”
“We had a whole email conversation on this Saturday night!” Honig says.
Nirenberg sent him to an ophthalmologist for preliminary tests, then met with him to conduct a baseline evaluation. On September 3, 2020, Honig received an eye injection with a light-sensitive protein and became the second person in Nirenberg’s clinical trial. Three months later, at home, Honig saw the light emanating from the menorah.
Nirenberg’s novel treatment combines gene therapy with a pair of computer-assisted glasses, similar in style to Google Glass. The format itself is not unique— other companies have used proteins and goggles to try and bring back sight. But Nirenberg says her device communicates visual information to the brain using the same language cells within the retina use. If the trial proves effective, it could restore vision to the roughly 2 million people worldwide who suffer from retinitis pigmentosa, and millions more if it works for other forms of blindness. Niren berg’s so-called neural code could also change computer vision as we know it.
“People think of the eye as being a camera and that the retina’s just the film in the back and the brain does all the hard stuff, but that isn’t true,” says Nirenberg. “The eye is actually a little mini image processor.” Through evolution, the eye has figured out which features from the visual world to pull out in order to perform the most basic daily tasks—from recognizing faces and objects to maneuvering around a room—and sends them to the brain. In RP, when photoreceptors die off, visual information can’t get in. Normally, a series of neural circuits between the photoreceptors and what are called ganglion cells translate the visual world into code the latter can understand and send to the brain. Scientists have tried to re-create this chain of communication using genes or electrodes. Through this approach, patients have been able to detect light and shape, but normal vision remains out of reach.
Nirenberg has devoted more than 20 years to research on vision. She’s published dozens of papers in peer-reviewed journals, won more than 20 patents, garnered a MacArthur “genius” grant, holds a chaired professorship at Cornell University, and helms two startups to develop applications for her work in humans (Bionic Sight) and computers (Nirenberg Neuroscience). Her backers, all angels, range from wealthy RP cure seekers to a retired Goldman Sachs banker.
But as Nirenberg’s commercial ambitions have advanced, her pace of publishing has slowed. Her last peer-reviewed paper appeared in 2018. Of course, the 700-page clinical trial application she wrote was reviewed and approved by the Food and Drug Administration between 2019 and 2020. Still, some academic colleagues wish she’d shine more light on the details of her neural code.
“People in the field, they’ve been skeptical because she hasn’t shown any of the nuts and bolts of how it works,” says Connie Cepko, Bullard Professor of Genetics and Neuroscience at Harvard Medical School, a Howard Hughes Medical Institute Investigator. Nirenberg worked in Cepko’s lab as a graduate student.
“If you share it with the world,” counters Nirenberg, “you can never actually bring it to people who need it, because by definition you become unpatentable. If you’re unpatentable, you can’t raise money.”
The standoff over patenting versus publishing has escalated over the past few decades, as private-sector funding for medical research has soared. But the concomitant de-emphasis on peer-review publishing can create a lack of transparency that leaves observers wondering whether they are looking at a scam like Theranos or a genuine breakthrough, like CRISPR.
If Nirenberg’s clinical trials and her computer vision startup prove successful, the questions about her lack of transparency may recede. But the larger question for the $750 billion global biotech industry is how it will fund future Modernas and Gileads and DaVincis without robbing science of its access to data and to studies that drive incremental advances. Open, basic research has delivered CRISPR, mRNA vaccines, and penicillin. As more scientists find fortune in patents, will science itself become all the poorer?
Nirenberg was born in New York City, the daughter of a psychologist and a poet, though she spent much of her young life in suburban Edgemont, a small community about 20 miles north of Times Square. She was the middle child of three girls, with a “super achiever” older sister, something she considers lucky. “Nobody was paying attention to me—except for, in a normal, loving parental way—so I was free to invent things and have ideas,” she says.
As an undergraduate at SUNY Albany, she studied literature, winning a university award for a short story as a freshman. But in her senior year, a class on genetics led her to consider the sciences. After solving a contradictory problem about DNA, she claimed her first research award. Suddenly, the possibility of becoming a scientist felt ripe.
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