Do-it-yourself science at home: despite my research training, this is something I have never given serious consideration.
Early in my career I was taught about the regulations necessary to ensure safety in a laboratory environment. Biohackers – a mixed community of scientists and non-scientists – don't believe in these authority-established guidelines. They are known for conducting experiments without regulatory oversight, often within their own homes, and even using themselves as test subjects. Can this be done in an ethically responsible manner?
In her new podcast, Reset, Arielle Duhaime-Ross explores how technology is affecting everyday life, providing alternative viewpoints on controversial topics through well-lead interviews.
In the first episode, 'Biohacking: Rules of Engagement', Duhaime-Ross interviews a biohacker named Josiah Zayner. The biophysicist and self-titled 'mad pirate king of biotech' achieved notoriety in 2017, when he injected himself with CRISPR genome-editing reagents onstage at a conference, while live streaming it on Facebook. His actions brought biohacking to the attention of the media and lawmakers; lawsuits followed and California recently passed a bill requiring safety labels on commercial genome-editing kits (see BioNews 1011).
Duhaime-Ross speaks to the bill's author, State Senator Ling Ling Chang who explains that the bill is meant to serve as an added safety measure: while selling and using CRISPR is not illegal, selling a product for human administration is.
The new regulation requires distributors to include a warning against self-administration before purchasing, and on the packaging of DIY CRISPR kits. Such labelling is not a new approach and has proven effective in contexts such as cigarette packaging. However, one might wonder if this is the right approach to avoid unqualified self-administration, or if this will fuel public fear of novel genome therapies.
Zayner himself owns a company affected by the new bill - it sells DIY CRISPR kits to modify bacteria at home. Duhaime-Ross talks to him about the safety of biohacking, and his 2017 scandal.
Zayner explains that behind his self-injection stood the question of why no one was actively using CRISPR, despite it receiving praise from scientists and companies alike. At the 2017 conference, he ran a class on how to genetically modify oneself, during which he injected himself with the CRISPR mix, which was meant to make his muscles grow bigger.
Any type of gene therapy entails risk – especially when administered incorrectly –and should only be used when framed by suitable authority-approved guidelines. I find it shocking that someone in the public eye would tinker with substances that could possibly alter their genome, and then willingly inject them into their bodies.
'It was more of a statement,' explains Zayner. 'I was trying to be an activist and push biotechnology forward.' However, he is now more aware of the consequences of his actions, as he inspired many 'copycats', some of whom suffered serious side effects.
The discussion of the potential dangers of unregulated science turns to scientist William Halford, a Southern Illinois professor who performed a clinical trial for a herpes vaccine without US Food and Drug Administration (FDA) approval between 2013 and 2016. Here the different views of the science journalist and the biohacker become very clear; whereas Zayner focuses on the participants that have gotten better from the unregulated trial, Duhaime-Ross points out that data from poorly conducted studies like this is unusable and can lead to unexpected risks.
'I don't think the only way to create medicine is through FDA-approved clinical trials,' Zayner suggests. 'The FDA is good at what they do. But I think there also needs to be room for other ways.'
I disagree with this statement. The FDA ensures safety standards with any medical advancement. This is incredibly important, because despite the excitement around new technologies like CRISPR, we need to fully understand all potential effects in the human body before clinical implementation. When pushing new technologies through rushed and imprudent experiments, biohackers like Zayner can cause adverse incidents and people end up being harmed.
Zayner, answering Duhaime-Ross's question whether is possible to be a responsible biohacker, says: 'According to the world, I don't want to be a responsible biohacker because that just means working in a highly regulated lab that follows all these protocols and all these things just for the sake of doing them and tries to do science for the sake of publishing papers and getting grants and not for exploration and creativity. I hope other biohackers also don't want to be responsible.'
This recklessness is what scares me most about biohacking. Radical individuals like Zayner, self-titled 'pirates', are the loudest and form the public image of the movement. At times, the interview raises the question whether his views should be given a platform at all, but Duhaime-Ross successfully depicts both the pros and cons of biohacking. Nevertheless I found myself wondering if there is any possibility for ethical DIY science going beyond building a soap volcano at home.
A different view is presented by the final guest, Alex Pearlman. The journalist and MIT-based bioethicist is engaging with the DIY science community to establish norms and ethic-based principles.
Pearlman reports back from the Global Community Bio Summit 3.0 in Cambridge, Massachusetts, where she led an ethics workshop aiming to create a set of guidelines for biohackers. Importantly, she says, there is a colourful mix of professionals and non-professionals in the community, in favour of finding common standards, and ultimately just wanting to help the greater good. She mentions the Open Insulin project as an example, a team of biohackers in the Bay Area working on a less expensive way to produce insulin for people with diabetes.
Overall, Duhaime-Ross asks all the right questions. This episode of Reset has opened my eyes to the ethical aspect of biohacking and the responsibility of scientists and authorities to provide regulation and education around new technologies like CRISPR. However, as Pearlman underlines, it is also important that biohackers follow some set of norms because only then can worst-case scenarios can be prevented.