MENU

‘I just want to live’: California man pleads with scientists around the world to ‘CRISPR me’

On one level, Malakkar Vohryzek always knew what was wrong with him. For as long as he can remember — he’s now 43 — the sun has been his enemy, making angry-looking moles pop up on his white-as-a-fish-belly skin like toxic mushrooms after a downpour.

At age 9, he bit one off. Since his teens he has had moles removed as regularly as other kids got haircuts, hoping to catch the growths before they became malignant. Because of his skin’s extreme sensitivity to sunlight, he takes every UV-blocking precaution, from SPF 60 sunscreen and hats and other cover-ups to, as a 19-year-old, working the graveyard shift as a waiter at Denny’s so he could commute in darkness.

But there is no name for what Vohryzek has, and no cure. There is no known inherited genetic mutation that might explain why just a few ultraviolet rays make his skin cells proliferate wildly, forming moles. One of these days, Vohryzek is convinced, he’ll overlook one, or wait too long before seeing a dermatologist, and he’ll wake up with malignant melanoma. That cancer, if it metastasizes, is usually fatal.

Vohryzek, a legal researcher and IT consultant in southern California, has therefore taken matters into his own hands. For the last few months, he has blitzed scientists, biotechnology companies, and biohackers as far away as Sendai, Japan, with email pleas to please CRISPR him. “I just want to live,” Vohryzek told STAT in an interview.

It was perhaps inevitable that the campaign to give patients the “right to try” experimental drugs before FDA approval — enshrined in a 2018 law  — would combine with unbounded optimism about the potential curative power of genome-editing technology to send someone like Vohryzek on this quest. In California, lawmakers were so concerned about people biohacking themselves or others with unproven therapies that they passed a law this summer banning it.

“I’d expect to see more” people like Vohryzek, said bioethicist Alison Bateman-House of New York University, an expert on avenues for patients to access experimental therapies. Although parents are increasingly asking scientists for access to experimental compounds that have never even been tested in animals, in order to save their children from a devastating disease, there are likely to be even more such pleas for genetic technologies.

“It’s so intuitively simple: replace or correct a gene that’s not functioning properly,” Bateman-House said. “There is so much hype, more and more people will think, I want that.”

Vohryzek reviews old photographs of himself (right) posted on Facebook (FB). This shows one of the last times he exposed himself to direct sunlight.DANIA MAXWELL FOR STAT

In his early 30s, Vohryzek became increasingly frantic about UV-induced DNA damage, which he fears is worsening with age. He’d spent much of his 20s in federal prison for distributing LSD, after which he legally changed his first name to a bastardization of the Arabic (malak al’ qur) and Hebrew for “Angel of Truth” and took his mother’s last name. After his release, he found that moles were erupting with frightening frequency, especially on his arms.

In 2017, he read that biohacker Josiah Zayner, who sells genetic engineering kits and lessons through his company The Odin, injected himself with a purportedly muscle-boosting CRISPR cocktail onstage at a biotechnology conference. “That inspired me,” Vohryzek said — though Zayner’s stunt didn’t work — and he began combing genetics papers for research on radiation protection.

Earlier this year, he happened on a gene that he believes will save him, one from the tiny, rotund, eight-legged water bear — aka moss piglet, aka tardigrade — which protects it from the damaging effects of radiation. A study from Japan reported that scientists had sequenced the genome of Ramazzottius varieornatus, a species of the famously resilient tardigrade, and identified a previously unknown gene. It turned out to code for a protein they called Dsup (for “damage suppressor”).

What caught Vohryzek’s eye was what happened when Takuma Hashimoto of the University of Tokyo and his colleagues slipped the tardigrade gene into human cells growing in lab dishes and then bombarded them with X-rays. Photon for photon, X-rays are hundreds of times more powerful than the sun’s ultraviolet rays. Human cells genetically engineered to express tardigrade Dsup withstood 40% more radiation than regular human cells.

Dsup works by minimizing the harm to genes, apparently, by encasing cells’ DNA, much like a lead shield in a nuclear reactor. As a result, radiation doesn’t break the strands of the double helix — a breach that can trigger cancer. Dsup, Vohryzek thought, could protect him from solar UV and therefore melanoma.

For the last few months, he has been asking scientists and companies if they’ll give him the biological supplies he would need — he isn’t always clear on what those might be — to receive the tardigrade gene, using CRISPR or some other technology to slip it into his cells.

Hashimoto’s experiment, Vohryzek told STAT, demonstrates “that I’m not proposing something insane. … I want to participate in [the] use of CRISPR on full genome gene insertion.”

Vohryzek cauterizes a mole on his skin at his home, hoping to eliminate it before it can progress to melanoma.DANIA MAXWELL FOR STAT

In July, he emailed his request to Hashimoto, explaining that he “will die soon from skin cancer” unless he receives the Dsup gene. “If you know a team that can … [use] CRISPR to insert the Dsup production into my genome,” Vohryzek promised, he would sign an agreement not to hold them responsible for any mishaps. If the experiment killed him, he said, he would donate his body to science so researchers could figure out what happened.

In fact, genome editing technologies such as CRISPR only tweak what already exists in a genome. It can alter a DNA “letter,” or nucleotide, to transform the gene from a disease-causing form to a healthy one. It can snip out regions from the former, disabling them and leaving only the healthy version (people inherit two copies of every gene, one from mom and one from dad). It can insert a few nucleotides in place of a misspelled, disease-causing segment.

But it cannot insert a completely novel gene. That’s called genetic engineering. Although there are now two approved gene therapies in the U.S., for a form of blindness and for spinal muscular atrophy, this intervention is considered less precise and more prone to problems than genome editing.

None of that has dampened Vohryzek’s interest. Although his chief motivation is avoiding melanoma — “I just know that eventually the roll of the genetic dice will come up snake eyes, and I will die,” he said — he also believes that becoming a human guinea pig would advance science.

“CRISPR science has the potential to save billions of lives, and end misery for billions more,” he said. “I have hundreds of reasons to willingly contribute my own body for furthering its research, and no reason at all not to.”

He has received almost no replies to his requests, and the ones he’s gotten have hardly been encouraging. “While technically feasible there are many ethical and legal implications to attempting this,” wrote an executive at the genetics supply company Atum. “I’m not sure what sort of help we can give you with this project. To be honest, it seems more like a science fiction project than a commercially viable product. We deal mostly with the latter.”

It seems unlikely that any academic or biotech scientists will grant Vohryzek’s wish. On the other hand, the birth of “CRISPR babies” also seemed unlikely, until scientist He Jiankui produced two of them in China last year. Just as that bombshell sent tremors through legitimate developers of CRISPR therapies, so could a rogue researcher putting a water bear gene into Vohryzek, said NYU’s Bateman-House: “I’m very worried about systemic ramifications, including shutting down gene therapy everywhere.”

None of the biohacker collectives contacted by STAT said it had been asked by patients for help with do-it-yourself genome editing, but Bateman-House suspects that it is just a matter of time. Earlier this month, Vohryzek asked a friend who was attending a hacker gathering in Las Vegas to see whether any of them might be willing to give him the Dsup gene, though he said he would “prefer the professionals” to a garage DIYer. In November, he plans to attend a meeting of a DIY collective in Seattle “to see if my experimental treatment is feasible for them.”

“If I die of melanoma, it won’t help anyone,” he said. “If I die because of an experimental treatment, it will at least help science.”