This post is a part of our Bioethics in the News series
By Jennifer Carter-Johnson, PhD, JD
In 2017, Josiah Zayner live-streamed himself injecting a gene therapy construct designed to edit the DNA in his muscle cells to give him bigger muscles. This moment was noteworthy because the gene therapy construct had been created entirely by Zayner in his garage laboratory. Such work is called biohacking or DIY biology.
These actions do not come without consequences. He has recently been investigated for practicing medicine without a license, and the state of California recently passed a law to require all such kits to include a notice “stating that the kit is not for self-administration.”
What is Biohacking?
Zayner is not alone; in fact, the biohacking movement is growing across the country. Zayner also sells kits that allow other biohackers to experiment with DNA and gene editing from his website, The Odin. There are also laboratories across the country that allow interested people to have space to conduct biology experiments without having to build a home laboratory.
Biohacking at its core is bringing science out of the laboratories of academia and industry and into grasp of citizen scientists. But the exact definition of what is included in biohacking differs among people. Biohacking includes a diverse variety of science experiments such as tracking of sleep and diet, under-skin implantation of computer chips and other technology, ingestion of “smart drugs” and sub-clinical levels of LSD, transplantation of gut and skin microbiomes, infusion of “young blood” to reverse aging, and genetic modification of bacteria, yeast and human cells.
Each type of biohacking brings its own risks and rewards. This blog post will focus on genetic modification of cells using new gene editing techniques such as CRISPR. Advances in gene editing technology over the past five years have made accessible science that was once confined to expensive, high-technology laboratories. For a broader look at CRISPR and gene editing by researchers and bio-hackers, Netflix has a new documentary series, Unnatural Selection.
Benefits of Biohacking
First and foremost, the benefit of biohacking is access to science. Not everyone can afford an advanced degree biology or wants to work full time in a laboratory. Biohacking democratizes science for people who have a passion for learning about the world and how it works. It also has the potential to increase access to medicine. One endeavor, the Open Insulin Project, attempts to find a cheaper and intellectual property-free way to produce and distribute insulin to make it available to people who have a hard time affording the drug.
In addition to access, biohacking communities are also hubs of outreach and education. The laboratory spaces often hold classes and meeting spaces for like-minded individuals to network. There are competitions that bring together student and citizen scientist teams who work on using synthetic biology to create biological solutions to local and international problems.
Biohackers are taking these responsibilities seriously as a whole. The community has even developed its own code of ethics emphasizing open access, transparency, education, safety, environment, and peaceful purposes.
Risks of Biohacking
Although biohacking has many benefits, there are risks of which the world and individual citizen scientists should be aware. Perhaps the largest potential threats are the lack of education and regulation within the biohacking community.
While Josiah Zaynor holds a PhD in biopohysics, not all biohackers are so well educated. Community laboratories help with classes and mutual support, but home-based biohackers must rely on their own knowledge and understanding, though websites are available for questions and discussions. Education and outreach to biohackers is also the strategy of the FBI in recent years, though many biohackers are reticent to accept its help. Additionally, while the community does have a code of ethics, there is little formal ethics training in concepts such as informed consent or using animals in research.
Due to the open definition and decentralized structure of biohacking, regulation is almost impossible. Lack of regulation leaves laboratory safety in the hands of the biohackers. As with any scientific endeavor involving genetic engineering, accidents can occur that could lead to the release of environmentally destructive organisms. Biohackers injecting themselves or others could cause any number of infections or adverse reactions. Additionally, the risk of the development of dangerous or ineffective gene therapies and other products by biohackers has led the Food and Drug Administration to issue warnings to the public about untested products. This risk is especially relevant in an era of rising drug costs.
Other dangers, such as specific threats to biosecurity, are real but attenuated. While it is possible biohackers could genetically engineer a bacteria or virus, there are far easier ways for a small-scale terrorist group to attack.
Future of Biohacking
Highly technical equipment and processes are becoming more accessible. People are looking for ways to take control of their health and provide access to medicines. Curiosity about the natural world should be encouraged.
The risks are real, but we can deal with them by working together. By having community leaders willing to confront the risks and help develop community norms, we can shape the application of biohacker energies. Zayner himself has realized that other biohackers may seek to emulate his self-experimentation and get hurt.
In the end, biohacking is here to stay.
Jennifer Carter-Johnson, PhD, JD, is an Associate Professor of Law in the College of Law at Michigan State University. Dr. Carter-Johnson is a member of the Michigan State Bar. She is registered to practice before the U.S. Patent and Trademark Office.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, November 14, 2019. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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More Bioethics in the News from Dr. Carter-Johnson: Web of Interests Surrounding Medicines Makes Patient Access Increasingly Difficult; Humanity in the Age of Genetic Modification; Defining The Spectrum of “Normal”: What is a Disease?; Dawn of False Hope: Spread of “Right To Try” Laws across the U.S.
References
- Zayner J. DIY Human CRISPR [Facebook live video]. October 3, 2017. Retrieved from https://www.facebook.com/josiah.zayner/videos/10102950199937847/.
- Regalado A. Celebrity biohacker Josiah Zayner is under investigation for practicing medicine without a license. MIT Technology Review. May 15, 2019. https://www.technologyreview.com/s/613540/celebrity-biohacker-josiah-zayner-is-under-investigation-for-practicing-medicine-without-a/.
- Regalado A. Don’t change your DNA at home, says America’s first CRISPR law. MIT Technology Review. August 9, 2019. https://www.technologyreview.com/s/614100/dont-change-your-dna-at-home-says-americas-first-crispr-law/.
- The Odin. http://www.the-odin.com/.
- Genspace. https://www.genspace.org/.
- Biocurious. http://biocurious.org/.
- Biotech Without Borders. http://www.biotechwithoutborders.org/.
- Samual S. How biohackers are trying to upgrade their brains, their bodies — and human nature. Vox. June 25, 2019. https://www.vox.com/future-perfect/2019/6/25/18682583/biohacking-transhumanism-human-augmentation-genetic-engineering-crispr.
- Unnatural Selection. Netflix. https://www.netflix.com/title/80208910.
- Open Insulin Project. https://openinsulin.org/.
- International Genetically Engineered Machine Competition. https://igem.org/Main_Page.
- Codes. DIY Bio. https://diybio.org/codes/.
- Wolinsky H. The FBI and biohackers: an unusual relationship: The FBI has had some success reaching out to the DIY biology community in the USA, but European biohackers remain skeptical of the intentions of US law enforcement. EMBO Rep. 2016;17(6):793–796. doi:10.15252/embr.201642483. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5278613/.
- Information About Self-Administration of Gene Therapy. U.S. Food & Drug Administration. November 21, 2017. https://www.fda.gov/vaccines-blood-biologics/cellular-gene-therapy-products/information-about-self-administration-gene-therapy.
- Lee SM. DNA Biohackers Are Giving The FDA A Headache With Glow-In-The-Dark Booze. Buzzfeed News. December 6, 2016. https://www.buzzfeednews.com/article/stephaniemlee/biohacking-booze.
- Vavitsas K. Controlling Biosafety and Biosecurity Threats, an interview with Michael Imperiale. PLOS Synbio Community. February 26, 2019. https://blogs.plos.org/synbio/2019/02/26/controlling-biosafety-and-biosecurity-threats-an-interview-with-michael-imperiale/.
MSU Bioethics 
Hello Dr. Carter-Johnson,
I enjoyed reading this blog post and learning about biohacking, as it’s a topic I was not previously familiar with. I am a Master of Social Work student, so social justice in health care is something that is very important. In what ways do you see biohacking advancing social justice and quality of life for people with chronic illnesses?
I think there are several ways that bio-hacking might be beneficial for society and people with chronic illnesses.
First and foremost, it is a way to get people interested in and educated about science who might not otherwise go into the field. More education (not formal degrees necessarily) arms people to make better choices. That kind of education should can only help as our society confronts all the challenges that we face.
Second, the individuals who are working on biohacking projects do so for lots of different reasons – some for fun and some to answer serious questions. We have a long history in this country of inventions being made by lone inventors. That has changed a bit as biology research grew so complicated that only well stocked and funded labs could get work done.
Now we are back to a point where people can work on things that they are passionate about. And they can work with other people who are equally passionate. The Open Insulin project is a great example of this. It started with a few people interested in trying to bring down costs for insulin, thus making it more accessible. It will be interested to see what they can achieve!
Hi Dr.Carter-Johnson,
I had not heard about biohacking before this post, so this was really informative to me. As a Masters of Social Work student we are constantly talking about individuals’ autonomy and right to self determination, but it is important to consider where we must draw lines in order to protect an individual. I’m curious as to your views on the balance of autonomy/self-determination and the possible legal and health implications within biohacking, such as with Josiah Zayner’s scenario?
You are right that autonomy and rights to self-preservation are important. Plus, we have a rich history of scientific advances that occurred because a researcher stepped up and put themselves in the role of guinea pig. Some people have even died to progress their own scientific research. There is value there, but only if the person truly understands the science and the value of what they are doing. Otherwise, it is a pointless death. Education there is key rather than regulation, IMO.
I don’t know exactly where the regulatory line should be drawn. But I certainly think there needs to regulations to stop people from taking advantage of those who don’t really understand the science or are so desperate that they will take hold of any snake oil that comes along. Not allowing sales of home-made technology or the practice of medicine without a license (on others) is a good start. Removing the possibility of ill-gotten gains can keep people honest. Those regulations are already in place.
Hello Dr. Carter-Johnson,
I found this article super interesting because this is a topic I’ve never heard of before. As a masters of social work student working in the healthcare field, biohackers could change the game of medicine. There are clearly both pros and cons to biohackers. However, potential policies and trainings could be created to keep society safe. What kinds of cures could biohackers find if they are successful?
The answer to your question is limited only by the imaginations and hard work of the biohackers themselves.
Generally, speaking the techniques are wide ranging. The ability to use genetic engineering allows people to create new cell lines (bacteria, yeast, mammalian, plant) that could produce novel medicines. CRISPR has made the development of gene editing constructs within the reach of biohackers.
Of course, there will be limitations to how much testing a biohacker can ethically do on their therapies in their own labs. But looking to groups like the Open Insulin Project, biohackers can band together to work on larger projects that need more people.
Hi Dr. Carter-Johnson,
Thank you for this perceptive look into an area I haven’t heard about before. I am also a Master of social work student so the ethical considerations surrounding biohacking are of great interest to me. You mentioned that there is currently no code of ethics regarding biohacking. Do you have any insights on if this would be established in the near future? Also, do you have any suggestions on what could be included to ensure the highest degree of ethical practice?
Actually, the community in both the US and Europe have developed their own codes of ethics, so there has been a start to the work. You can check out both codes of ethics at https://diybio.org/codes/. Those codes do speak to safety and respect for people and the environment, but I do think they could be further strengthened by mentioning informed consent and human research safety specifically.
Thank you for a very interesting article Dr. Carter-Johnson,
While you note that biohacking holds many risks and rewards directly from interventions, like introducing a gene therapy to an experimenter, it seems as though some of the indirect benefits of biohacking as a concept (accessibility to a wider audience, new interest in biological engineering, etc) could easily translate to direct health benefits for our wider society. As you’ve already responded with other comments, I understand that when it comes to bioethics, these self-testing behaviors by biohackers are in a sort of grey area. Could a practical and successful intervention demonstrated by biohackers be applied to help others seeking gene therapy? How would lessons learned from biohacking be applied in the federal testing laboratories with human experimentation?
Moving from self experimentation to a larger application is indeed where biohacking faces the most issues – both from an ethics and distribution perspective.
From an ethical perspective: While there is a code of ethics from the community, it is brief and presumably should be read in light of general ethics on informed consent. However, because these experiments are not federally funded or seeking federal approval, they lack many of the controls that are generally found in the process to keep patients safe. OTOH, citizen scientists are not often medical doctors so to the extent that they do treat patients they open themselves up to charges of practicing medicine without a license from their state. So there is a quandary there.
From a distribution perspective: The biohacker code of ethics is about access. So commercialization of a new therapy, a process which usually depends on intellectual property and limited monopolies, will be difficult.
I don’t think moving from biohacker space to therapy space is an impossibility, though. I just think it may take some out of the box thinking. There are open access projects in the computer space that I think we could learn from. There are funding mechanisms that don’t rely on intellectual property that could be used to get good data on the safety of a proposed therapy.
There are many labs in universities that I think would be willing to team up with biohackers if that funding could be secured. Federal money could also be put aside either as grants or as laboratory time to help biohacker who have found potentially effective therapies. By bringing in larger labs after the biohacker has made a discovery, we can add more resources and more ethical oversight to the process.
A second option might be to have a biohacker non-profit (run by bio-hackers) that works to raise money for laboratory space, time and experts to help biohackers take their therapies/inventions beyond the lab to patients.
In the end, I don’t think most biohackers who create a new therapy have the ability to go it alone to move that therapy safely to patients (or even clinical subjects). But I think there are ways the biohacking community could evolve to support new creations from the biohacking space.
Dr. Carter-Johnson,
I appreciate your post. This was a topic that I did not know existed, but has a great impact on the world of medicine. We often hear about the expenses that come with accessibility to affordable medication. I am curious on your thoughts about the future of biohacking. Do you think that this is a treatment we can predict to see frequently in the future of medicine? If so, how do you think it would impact modern medical practices?
I don’t know that I think it will be more significant than the systematic way in which drug companies approach drug development from a monetary perspective.
Where I think biohacking may have its great impacts are in progressing research on problems that don’t have normal monetary incentives, such conditions where there are low numbers of patients. Even there, getting through the regulatory hurdles is rarely something a lone biohacker could manage. However, if biohackers can provide novel ways to attack problems, non-profits and universities and others can build on that information.
One area in which biohacking may have it greatest impact on medical practice is if the community can get together in such as way to find low cost solutions for access to medicine. The Open Insulin Project is one such initiative.
Thank you for such an interesting article Dr. Carter-Johnson! This reminds me of a story I heard on NPR recently concerning Victoria Gray and CRISPR for sickle cell disease, which was a very interesting and amazing development. I also heard another similar story on NPR about a supplement or pill that is designed to reverse signs of aging both internally and externally. This said, and with resources already being threatened and high levels of pushback STILL being practice against environmentally-friendly alternatives, what are you thoughts on seeing a future where the average human life span increases into the 90s?
Even without thinking about resource depletion and overpopulation, the increasing gap between the poor and wealthy will keep this from happening in the near term future. Based on our current system, I think access to those sorts of treatments will be out of reach of the common person for many years after development. So I don’t see the average age shooting up anytime soon.
Biohacking may help to close that gap by developing open source treatments, but I suspect that biohacking developments may progress to general population level therapies slower than other therapies due to the lack of infrastructure.
I found this addition and issue of Bio hacking very intriguing to say the least. The name itself ( bio hacking) sound criminal or bad to me. However, I think that BIO hacking for good purpose, to cure diseases, or life longevity is definitely exciting and worthwhile. As noted tho in the article, there are risk as well as rewards. I do believe there needs to be regulation and ethical standard brought forth to regulate BIO Hacking to make sure, no harmful virus are created on accident.
Hacking is a funny term. Obviously it is borrowed from the computer industry. But while the media always use it in a negative light, computer geeks don’t. In the computer industry, a hacker is someone who breaks into a computer’s security system. But you have both white hat hackers and black hat hackers. White hat hackers do not use their powers for evil – but rather to test for vulnerabilities and such to make the world safer. So, for us bio-geeks, the term biohacker really just reference the skill and desire to play with the technology not anything inherently good or bad. DIY Biologist just doesn’t roll of the tongue quite so well.
Agreed on the regulation and ethical standards.
Hello, My name is James, I am also a current MSW graduate student, I found this addition and issue of Bio hacking very intriguing to say the least. The name itself ( bio hacking) sound criminal or bad to me. However, I think that BIO hacking for good purpose, to cure diseases, or life longevity is definitely exciting and worthwhile. As noted tho in the article, there are risk as well as rewards. I do believe there needs to be regulation and ethical standard brought forth to regulate BIO Hacking to make sure, no harmful virus are created on accident.
Letting you know that I replied to you in the above comment, just in case you check here first. .
Hello Dr. Carter-Johnson,
I’m also a current MSW student. You mentioned the Open Source Insulin project in your post, and I wonder–what thoughts do you have on the potential impact of the US transitioning to a more socialized healthcare system on the “demand” for biohackers? Though there are folks out there doing biohacking for fun, it seems that a major focus for many biohackers is to supplement patchy coverage in our healthcare system. I see the huge potential benefit of “open source medications” currently, especially since we have a healthcare system that is set up such that people who can’t afford life-saving meds like insulin face imminent harm and there is no solid safety net for them. Then there are folks like Mr. Zayner who are clearly attempting to profit directly from their discoveries rather than having a more humanitarian focus. Could greater access to healthcare services and products through a more socialized healthcare system relegate open source and humanitarian projects unnecessary, and thus shift biohackers who are trying to make a profit more toward criminal status?
While i think better access to healthcare services might make open source and humanitarian projects directed at access less necessary, I don’t think it would shift biohackers to work on criminal projects. Even if we have universal healthcare, there will still be areas to advance in our understanding of disease and not enough formal resources to tackle everything at once. My guess is that biohackers will seek out those holes in order to make a difference. We will never know everything. There is plenty for everyone to explore.
Additionally, the motivation to become a criminal (create biowarfare diseases) is very different from trying to make a difference to better humanity. I think white hat biohackers will remain so, just with a different focus.
Hi Dr. Carter-Johnson,
First of all, thank you for sharing this enlightening blog post. I am a graduate student in the MSW program here and admittedly, I had not heard of biohacking until I read your blog post. My immediate reaction was concern. You mentioned that there is not much regulation on biohacking and this concerns me because, while I love the idea of people taking charge of science, there may be a chance for biohacking to be more harmful than helpful. Do you have any suggestions on ways that they could regulate this more? If so, how would biohacking be regulated while still respecting the primary idea of autonomy behind biohacking? It sounds like the whole point behind biohacking is that it gives everyone the opportunity to participate in science. Overall, this was a very informative post about a subject I was not aware of, so thank you for sharing your insight on the matter!
Kayla H.
I think there is always a chance that good things can be turned to evil. The question is how far do we want to regulate those things to prevent evil? For now, I think our current regulations on the practice of medicine and selling unapproved medical therapies are sufficient governmental regulation. Beyond those regulations, I think it is more about community policing than burdensome regulations.
For instance, the biohacker community’s approach to ethics and self-regulation is key. The community itself must develop social norms for the betterment of the entire society. They seem to generally be on the right track there.
Outreach and education of the dangers of biohacking should be a key component. We in academia should be reaching out to biohackers with our own expertise to lend aid – whether that be in scientific techniques, ethical research and informed consent, or regulatory hurdles. We don’t want people to doing bad things out of ignorance. The more people in your immediate community doing good, the less likely you are to be doing bad, IMO.
Finally, the FBI and other governmental agencies can work with the biohacker community in different capacities. Such interactions might give people places to go when they suspect someone is doing something dangerous.
Hello!
I really enjoyed reading about a subject that I really hadn’t thought much about- outside of the movies. I think myself, and many others, probably limit our knowledge of this topic to what we have seen on TV. I’m curious as to how you think the media’s portrayal of biohacking has contributed or detracted from the knowledge base.
At this point, I think the traditional sources of media such as newspapers and TV have mostly not addressed biohacking at all – thus having little to no impact. Social media, such as the live streaming of the CRISPR based injection, has been mostly just sensationalist. So I don’t think there has been much added to the knowledge base at all. If anything, I’d say the media has made it look like a fringe group of geeks playing scientist with a few conspiracy theory groups talking about doomsday scenarios.
That response is a shame. Communication and education is such a key to increasing the visibility of biohacking and interest in science generally. I think popularizing biohacking could be a way to draw more young people into science – same as hacking was for computer science.