Josiah Zayner in his home lab.
[Editor's Note: This op/ed appears in response to January's Big Moral Question: "Where should we draw a line, if any, between the use of gene editing for the prevention and treatment of disease, and for cosmetic enhancement?" Currently, it is illegal to develop human trials for the latter in the U.S.]
Homo sapien: a bipedal primate that is thought to be the only animal to construct a moral code. Despite the genetic differences between members of our species being less than 1 percent, we come in all shapes, sizes and colors. There is no normal for human genetics.
I believe genetic freedom is the most basic human right we all should have.
One DNA base change here, another there brings us humans with light skin, red hair and big muscles. Want to be an NBA All-Star? Your genes are by far the largest determinant of your height and well, there has never been an All-Star under 5'9". Sexual reproduction makes it so that our physical traits seem more a pinch of this and a dash of that than some precise architectural masterpiece. For the most part we have no control over whether we or our children will be the next Cristiano Ronaldo or are born with a debilitating disease--unless we use genetic engineering.
Anywhere from 64% in the US to over 82% of people in China support genetic modification of individuals to help treat diseases. I imagine that number will only increase as people become more familiar with the technology and I don't think most people need convincing that genetic modification for medical treatment is a good thing. In fact, most modern drugs are genetic regulation on a fundamental level. But cosmetic genetic modification is far more controversial with only 39% of people in the US finding it agreeable. Far fewer people support modifying the genes of babies before they are born. My question is: Where does one draw a line between cosmetic and medical genetic changes?
Modifying the genetics of individuals for medical reasons started in the late 1980s and early 1990s when scientists reprogrammed viruses so that instead of causing harm when they infected people, they changed the genetics of their cells. Much has changed and and despite the success of many gene therapy trials, people are still afraid. Perhaps because of concerns over safety, but gene therapies have been tested in over 2000 clinical trials in hundreds of thousands of people. So what are we so afraid of? I asked myself that same question in 2016 and could not find a basis for the fear and so performed the first successfully cosmetic human genetic modification by putting a jellyfish gene in my skin. The experiment was simple, the monetary cost minimal, and though my skin didn't fluoresce like a jellyfish, DNA testing showed it worked and the experiment showed me what was possible.
People are afraid because we are on the cusp of the human race changing as we know it. But isn't that change all we have been striving for?
In late 2017, I wanted to explore bigger cosmetic changes, so I did another genetic experiment on myself; I injected myself with a CRISPR/Cas9 system meant to modify myostatin, a gene responsible for muscle growth and fat loss. I didn't do it because I wanted bigger muscles but because the myostatin gene is a well-studied target that has been modified in many mammals using CRISPR. I feel a responsibility to try and push boundaries that scientists in universities and large corporations can't because of committees, regulations and social acceptability. When this cutting-edge technique was tried for the first time, it wasn't in an expensive lab and it didn't cost millions of dollars. It was done by me, prepared in my home lab, and the cost of this cosmetic treatment was under $500.
Home genetic engineering lab kits like this are sold by Zayner's company for less than $2000.
I have had many people call me crazy and worse, but they don't understand that I've undertaken these experiments with much thought and hesitation. Experimenting on oneself isn't fun; it is an unfortunate situation to be in as a Ph.D. scientist who less than two years ago was fulfilling a prestigious synthetic biology fellowship at NASA. The data points to the experiment being relatively safe, and similar experimental protocols have had success, so why wait? When so much is at stake, we need to show people what is possible so that one day we all can have genetic freedom.
Zayner's arm after attempting the first CRISPR injection showed little immune response; a small red dot in the upper left forearm can be seen at the injection site.
People are afraid because we are on the cusp of the human race changing as we know it. But isn't that change all we have been striving for yet unable to obtain? Have too much or too little hair? There is a non-gene therapy treatment for that. Want to change your appearance? The global cosmetic surgery market is over $15 billion. Tattoos, dyed hair and piercings abound. We sculpt our appearance by exercise, make-up, drugs, chemicals and invasive surgeries. We try so hard to fight against our genetics in every way except genetic modification.
Being human means freedom to be who we want to be. And at the moment, no one gets to choose their genetics. Instead, nature plays a probabilistic role in the most primitive genetic engineering experiment of sexual reproduction. This dice roll can sometimes end in tragedy. Fortunately, in my case I was born with the genetics of a healthy individual. Still, I push for everyone and though my newest genetic modification experiment is ongoing, even if it doesn't work, it is only a matter of time until it does in someone.
If you prevent someone like me from changing my genetics, where do you draw the line? Only people who can't walk can get genetic modification? Only people who can't run? Only people who are predisposed to skin cancer? Don't we all deserve a choice or to give parents better ones? I believe genetic freedom is the most basic human right we all should have. We no longer need to be slaves to genetics so let's break those bonds and embrace the change brought about by allowing human genetic engineering for all no matter the reason.
[Ed. Note: Check out the opposite perspective: "Hacking Your Own Genes: A Recipe for Disaster." Then follow LeapsMag on social media to share your opinion.]
Previously, Dr. Bause worked at the Boston Consulting Group in its healthcare practice specializing in biopharma strategy, among other priorities
She did her PhD studies at Harvard Medical School focusing on molecular mechanisms that contribute to cellular aging, and she’s also a trained pharmacist
In the episode, we talk about the present and future of therapeutics that could increase people’s spans of health, the benefits of certain lifestyle practice, the best use of electronic wearables for these purposes, and much more.
Dr. Bause is at the forefront of developing interventions that target the aging process with the aim of ensuring that all of us can have healthier, more productive lifespans.
