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‘Biohackers’ and DIY Gene Therapy

Two things that have defined the 21st century are genomics and the internet. Through a combination of these has emerged a controversial type of ‘influencer’ on the internet – self-gene-editors or ‘biohackers’. Biohacking can be described as ‘do-it-yourself biology’, and can range from small diet and lifestyle changes all the way to very extreme self-experimentation.

The motivations of biohackers are diverse. Some are motivated by a belief in the “right to do science.” Others place a high value on bodily autonomy or creative expression—a right to experiment on themselves or use genome editing for expressive purposes. Some view biohacking as a means of self-care, where they experiment with alternatives to expensive regulated drugs. Others think that traditional scientific institutions are poor regulators of themselves or are slow and needlessly cumbersome.

Examples of biohacking

One of the most infamous biohackers is Josiah Zayner. He has a BA in plant biology from Southern Illinois University and a PhD in biophysics from the University of Chicago. Before receiving his Ph.D he earned an MSc in cell and molecular biology from Appalachian State University. Zayner believes in the importance of letting the general public participate in scientific experimentation, rather than leaving it to labs.

Biohackers often consider themselves educators. For many biohackers, their presence is widely accessible through social media.

In February 2016, Zayner attempted a full body microbiome transplant on himself, including a faecal transplant, to experiment with microbiome engineering. The microbiome from the donor’s faeces was successfully transplanted, according to DNA sequencing done on his samples. This experiment was documented and turned into the short documentary film, ‘Gut Hack’.

In December 2016, Zayner created a fluorescent beer by engineering yeast to contain Green Fluorescent Protein (GFP) from jellyfish. Zayner’s company subsequently released kits to allow people to create their own engineered fluorescent yeast.

There have also been videos of Zayner attempting to genetically engineer the colour of his skin. And most notoriously, Zayner injected his arm with DNA encoding for CRISPR that could theoretically enhance his muscles, although it was widely agreed that this would be unlikely to work.

Another well-known biohacking experiment was done by Elizabeth Parrish, the CEO of BioViva, a Seattle-based biotech company working to develop treatments to slow the ageing process. In 2015, Elizabeth allegedly underwent an untested ‘telomerase gene therapy’ in Bogotá that would have violated federal regulations in the U.S. Many extravagant and dramatic news articles detailed her story, but did it work? BioViva claims that six months after treatment the telomeres in Parrish’s white blood cells had lengthened by 9%. This announcement was met by incredulity from many scientists, who cited the lack of proper scientific procedure. Even if the telomeres were extended, there is no long-term evidence in humans of it actually preventing disease.

Aaron Traywick, the CEO of a biomedical startup Ascendance Biomedical, also, sparked controversy when he injected himself with an untested herpes treatment in front of a live audience. Aaron was later found dead in a flotation tank, which is a soundproof pod filled with body-temperature saltwater that is used to promote “sensory deprivation”. This shocking revelation prompted much discussion on the safety of biohacking practices.

Safety and criticism

To me, the idea of self-injecting an unregulated, potentially biologically active substance into my body is terrifying. So why do people attempt to biohack? It seems as though a key motivation for many biohackers is a feeling of frustration around the “overregulation” and slow pace of progress that follows.

Elizabeth Parrish is quoted as saying, “A culture of risk-aversion is slowing our innovation”, while Zayner has called the ‘academic biohacking community’ exclusive and hierarchical, particularly with respect to the types of people who decide what is “safe”. Scientists have responded that biohacking is inherently exclusive, with its dependence on leisure time and money, and that deviance from general safety rules could lead to even harsher regulations for all.

Carolyn Chapman, Bioethicist and Faculty Affiliate with the Division of Medical Ethics at NYU Grossman School of Medicine, said, “I can understand the sentiment that biohackers seem to express, which is that they want to have access and that the system of regulation impedes access”. It’s true that – almost by definition – regulation impedes access and slows progress. But it’s about striking a balance between progress at all costs, and safety. Chapman went on to say, “regulatory bodies are really intended to protect individuals and public health… even laboratory research can be dangerous… if you’re interested in science, then there are ways to get into the system. I definitely respect the importance of education and bringing in all different kinds of people.”

In 2020, the state of California made it illegal to sell a do-it-yourself genetic engineering kit unless it came with a clear warning stating that “the kit is not for self-administration.” It’s the first US law to explicitly address the gene-editing technology CRISPR.

When Zayner was asked why he originally injected himself with CRISPR on a live-stream, he reflected on his stunts as “social activism” gone awry. Today, he is still planning to sell DIY CRISPR kits, but instead, to teach people how to genetically modify bacteria and frogs, rather than themselves.

Will we see a rise in biohackers as advanced biological technologies become increasingly cheap, portable, and effective, or will be see a clamp down on these activities with regulatory force? Either way, I think I’ll stick with the professionals!

Image Credit: Canva

More on these topics

biohacker / CRISPR / Ethics / Regulation

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