From The Island of Dr. Moreau to the X-Men, the manipulation of the human genome has long captured the public imagination. Now, the stuff of fiction has become reality: The era of genetic modification is here.
On November 13, doctors at the UCSF Benioff Children’s Hospital in Oakland, California, administered the first ever gene editing treatment to a live patient. They weren’t injecting him with spider DNA or turning him into a supersoldier, but rather attempting to eliminate a degenerative disease previously thought to be incurable. The patient, Brian Madeux, suffers from Mucopolysaccharidosis type II, commonly known as Hunter syndrome. This rare disorder is devastating to the body’s primary systems, causing progressive damage to the heart, bones, joints, and lungs. Many Hunter patients die before they turn 20.
The cause is rooted in a genetic mutation. Sufferers of Hunter syndrome are missing a crucial enzyme that breaks down sugar deposits in cells.
“If you think of your cell as a house, and over time, trash accumulates, this enzyme sort of helps take out the trash,” said Dr. Edward Conner, a senior vice president at Sangamo Therapeutics, which invented the gene editing treatment. While the science behind the treatment is complex, the actual procedure is simple: Madeux was hooked up to an IV that delivered Sangamo’s proprietary gene editor into his bloodstream, along with versions of the missing gene that his body needs to “take out the trash.” The whole process lasted only a few hours, but the results will hopefully last a lifetime.
What Madeux’s case doesn’t address are the nagging moral questions embedded in the idea of gene manipulation. We can all agree that curing degenerative diseases that cause pain and suffering is imperative. But what are the implications of being able to pick and choose your genetic profile, a la carte? Could this technology be used to restore my thinning hair? Make my brown eyes blue?
And how should we regulate who gets gene editing and how? One man, Josiah Zayner, wants it to be available to all, seemingly to do whatever they want to do to themselves. He’s promoting the use of a gene editing technology called CRISPR for at-home genetic modification, posting a DIY gene editing guide on his company’s website.
“I want to live in a world where people get drunk and instead of giving themselves tattoos, they’re like, ‘I’m drunk, I’m going to CRISPR myself,’” Zayner told BuzzFeed News.
He may sound like a lunatic, but Zayner has a Ph.D in biochemistry from the University of Chicago. He’s used himself as a human guinea pig, recently trying to get swole by modifying his muscle genes. His biceps haven’t gotten any bigger, but some of his other DIY experiments have shown promise: Zayner once injected himself with the gene that makes jellyfish fluorescent. When he sent a skin sample to a lab for testing, the results showed that the gene actually did bind with his cells, though it didn’t actually make him Zayner fluorescent.
Sounds cool, right? But there is a more sinister side of the equation. DIY genetic modification can be exceptionally dangerous, with a high risk of infection and misuse. And if the DIY movement flounders and this technology remains out of reach for the average person, how will that affect the already massive disparity between rich and poor? Will the wealthy be able to essentially eliminate disease from their bloodlines, while the less fortunate continue to suffer? Moreover, who’s to say what makes an “undesirable” trait that should be edited out of existence? Don’t redheads have it bad enough? With so many questions to address, we are only just beginning to unpack the possibilities of a fraught but exciting field.
That said, I’ve always wanted to dunk a basketball, so … do whatever you have to do, science.