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.

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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.

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“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.”

Malakkar Vohryzek
Vohryzek reviews old photographs of himself (right) posted on Facebook. 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.”

Malakkar Vohryzek
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.”

  • I’ve had genetic testing that reveals which mutation is overwhelmingly likely to be causing my symptoms, which is diagnosed as a connective tissue disorder. Even knowing exactly which gene needs to be fixed, I have absolutely no hope I’ll ever get access to this technology because I’m disabled and thus haven’t been able to pleasure/enrich a capitalist enough with my labor for them to allow me to have access to this. I believe people in my situation shouldn’t bother trying to beg the rich (including all medical professionals in imperialist countries) for anything, they clearly don’t care about us and only revolution will correct this situation. Vote Insurrection 2020.

    • Please read my previous comment explaining how CRISPR and other gene editing technologies work as it pertains to editing mutations in human cells. Briefly, it would be infeasible and near impossible to CRISPR every connective tissue/muscle cell in your body as they are somatic cells which do not propagate their DNA. The only way to correct disease-associated mutations directly is to perform CRISPR while you are an embryo, and even then you would ‘select’ for embryoes that have the successful ‘correction’ and hopefully no other off-target editing mistakes. Then you do IVF into a mother. However, unfortunately for adult disease patients CRISPR is rarely the ‘miracle treatment’ that people are looking for. In a few specific cases where correction of a small amount of stem cells that contribute to the disease can lead to cure (eg ex vivo isolation, gene editing, and transplantation of bone marrow stem cells to alleviate sickle cell anemia.) This article should have explained more about the real science and limitations of CRISPR so people who are desperate and need treatment don’t develop false expectations of the technology.

    • Stay in your lane Michael. I didn’t reveal all the details about my medical condition because I didn’t want to make it about me, but rather the fact that any new medical technology will only be provided to the rich for many years before the poor may start to be able to access it (DNA testing itself is one example). All of my connective tissue cells don’t need repaired. I have what is very likely to be a single mutation which leads to faulty collagen being produced throughout my body. If you’re like any other typical medical “professional,” you don’t even know how to spell the name of my disorder, but pretend you know what’s right for me.

    • Truly I sympathize for your medical condition; the fact that your mutation exists means that all of the cells in your body carry the mutation and it affects all the collagen throughout the body as you yourself said. The way CRISPR works is that it randomly correct a few cells if at all. The only way to cure any disease caused by any mutation (generalizing for all readers since you don’t want to make it about you) is to do it before the baby is born and ideally at single cell embryo stage. This is well know in scientific community and another commenter describes this below as well. It is unfortunate and I don’t mean to be a Debbie downer but CRISPR is NOT was many people believe it to be. If more media and news were to help educate people about how it actually works then people will realize they should not put their hope in this technology. Instead there are other medical treatments in development that should be the focus. BTW this is my lane as a scientist and educator who works directly with CRISPR in the lab. The “ingredients” needed to CRIPSR are quite cheap: just need some DNA, some proteins, and the nutrients needed to grow cells. Much of this is available online for less than $200 total. But it’s as a medical application the success rates for correcting an inherited mutation causing disease is 0%. It just does not work the way people think. And most of this is due to the media not properly covering the news about the tech and also not explaining the science behind it. I am simply trying to help with this issue since it’s articles like this that misleads real patients and people like yourself that need real help.

  • Beyond the ethical considerations of gene-editing a human, what this article fails to mention is that CRISPR or other forms of gene-editing, while potentially useful for inserting, deleting, and altering point mutations of genes in cells, would be technically infeasible to ‘cure’ an adult human of malignant skin grow. The reason is that even if Mr. Vohryzek’s condition could be credibly linked to malignant mutation of a specific gene, correcting this mutation in a subset of skin cells would not prevent his other unCRISPRed cells from developing the same malignancy. This is because most of the cells in an adult’s body are somatic cells (non-reproductive cells). The only way to treat this condition purely with gene-editing correcting of the mutation is to correct this mutation in germ cells (sperm and egg) or in the fertilized embryo before undergoing many cell divisions such that the corrected gene is propagated throughout all the subsequent cells during development and growth.

    What CRISPR gene-editing has mainly been useful in medical applications is when used in combination with immunotherapy to edit immune cells (T-cells mostly) to help the immune cells attack malignancies, though these are still undergoing clinical trials. Another application for ‘curing’ sickle cell anemia has CRISPR editing used on bone marrow cells (a special kind of stem cell that makes red blood cells) and editing them to produce hemoglobin that prevents sickle cells. These bone marrow cells are transplanted back into the patients from which they are isolated.

    Unfortunately, no such technology exists for editing of epidermal (skin) stem cells and the requirement to edit every epidermal stem cell to correct any potential mutation would just be practically infeasible. To summarize, one does not simply inject oneself with DNA and CRISPR-Cas9 and claim that gene editing has been performed. More likely than not the DNA and Cas9 just trigger an immune or inflammatory response and is cleared by the body.

    These kind of gene editing fantasies touted by so-called biohackers that mislead desperate people suffering from real diseases are propagated by articles like this that fail to properly explain the actual science to the general public.

  • One thing he could try before going crazy would be taking regular large doses of SOD (superoxide dismutase). That helps prevent/reduce sunburn if you have sensitive skin…perhaps it can help protect against his reaction to the sun as well. GliSODin is a version that is supposed to be better absorbed. And if age has made this condition much worse, it is possible one of the NAD boosters might help.
    I burn really easily. SOD seems to help me. And perhaps this is just me, but I think hibiscus tea helps as well. Though I just blend half a cup of dry flowers in water and strain it rather than boiling or letting it sit for hours. Then add sweetener to taste.

  • Great idea. Advances of science always involve risks. He might take up residence in my country that doesn’t create barriers for him.

  • Not impossible to transform nearly every relevant skin cell, but it would be utter torture. You could start with one or a few modified skin stem cells and grow him a new skin re-extending telomeres. It is well known how to extend telomere in skin cells cultures (TA-65 is one substance that can extend telomeres permitting more cell divisions before reaching the Hayflick limit), and they know how to stimulate growth and provide a viable scaffold (laminin proteins LN-511 or LN-421). It would be slow replacing one swatch of skin at a time. Probably upwards of 5 years to replace all of it, it probably would not look too good either. Getting thickness right and circulation will not be easy. There could be nerve issues as well. Usually the nerves grow back, but it takes a few months.
    Personally, if I had this problem I would only bother with the hands arms neck and face. I also would avoid anything with a mucus membrane. That would be more aggravating than the condition he has.

    Not cheap, of course. But this kind of thing can help burn victims and people who have had flesh-eating bacteria and such. And modifying skin could be good for people who are allergic to water and other very difficult to deal with allergies.

    • I am a scientist growing organotypic epithelial cultures with primary human cells, including after CRISPR editing, and this is simply not possible at the moment. Please think.

  • I am a scientists who works on CRISPR genome editing technologies. Unfortunately fixing something like what is described here with CRISPR or any other existing genome engineering technologies is likely not possible. The problem here is likely a variant that makes all of Malakkar skin cells more susceptible to cancer (likely a mutant tumor suppressor gene or something similar). We currently do not have any genome editing technologies (even if we new which gene was responsible for this issue) that could deliver gene therapy to 100% of the cells. On top of that CRISPR doesn’t always make the right changes. Let’s say best case (not even possible with todays technology) only 95% of cells were treated, the 5% untreated would still lead to this problem and still result in increased risk of cancer. Gene therapy has the most promise for things like hemophilia or sickle cell anemia where you don’t have to restore 100% of cells to normalcy to receive a benefit. Editing embryos is actually substantially easier than the challenge of editing all cells in an adult as you only need to edit one cell to start with.

  • “Many ethical and legal obstacles” is snotty capitalist-speak for “you’re too poor for us to try”.

    This was inevitable. Once real medical help became somewhat scientifically understood and technologically possible, the absolute demand for equal treatment would become a flood of desperate millions — health, the preeminent concern of all mankind, because sickness is, after all, the main natural cause of suffering. The main artificial cause of suffering is the fatalistic and paradoxically elite-servile attitude exemplified by this article and the establishment. There will be a revolution over this.

  • What this gentleman, and many others, don’t seem to get is that the main issue with CRISPR, as any other gene editing technique, is not the editing itself.
    Because, even though to achieve 100% efficiency of the mere process of editing the desired gene is a challenge in its own merit, the largest hurdle is how to deliver with high efficiency the molecules responsible for editing to the target tissue/cells. And, we are still quite far from achieving that.
    Admittedly, it is much easier to succeed on an early stage embryo.

    • He clearly gets it. He specifically asked to be the subject of experimentation (and he’s clearly right and thinking clearly), which is eminently ethical when new frontiers open up like this, giving the suffering a glimpse of a worthwhile future. The only obstacle here is the money system.

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