Genetic Engineering For All: The Last Great Frontier of Human Freedom
[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.]
Hacking Your Own Genes: A Recipe for Disaster
Editor's Note: Our Big Moral Question this month is: "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?" It is illegal in the U.S. to develop human trials for the latter, even though some people think it should be acceptable. The most outspoken supporter recently resorted to self-experimentation using CRISPR in his own makeshift lab. But critics argue that "biohackers" like him are recklessly courting harm. LeapsMag invited a leading intellectual from the Center for Genetics and Society to share her perspective.
"I want to democratize science," says biohacker extraordinaire Josiah Zayner.
This is certainly a worthy-sounding sentiment. And it is central to the ethos of biohacking, a term that's developed a bit of sprawl. Biohacking can mean non-profit community biology labs that promote "citizen science," or clever but not necessarily safe or innocuous garage-based experiments with computers and genetics, or efforts at biological self-optimization via techniques including cybernetic implants, drug supplements, and intermittent fasting.
They appear to have given little thought to whether curiosity should be bound in any way by care for social consequence.
Against that messy background, what should we make of Zayner? The thirty-something ex-NASA scientist, who describes himself as "a global leader in the BioHacker movement," put his interpretation of democracy on display last October during a CRISPR-yourself performance at a San Francisco biotech conference. In that episode, he dramatically jabbed himself with a long needle, injecting his left forearm with a home-made gene-editing concoction that he said would disrupt his myostatin genes and bulk up his muscles.
Zayner sees himself, and is seen by some fellow biohackers, as a rebel hero: an intrepid scientific adventurer willing to risk his own well-being in the tradition of self-experimentation, eager to push the boundaries of established science in the service of forging innovative modes of discovery, ready to stand up to those stodgy bureaucrats at the FDA in the name of biohacker freedom.
To others, including some in the biohacker community, he's a publicity-seeking stunt man, perhaps deluded by touches of toxic masculinity and techno-entrepreneurial ideology, peddling snake-oil with oozing ramifications.
Zayner is hardly coy about his goals being larger than Popeye-like muscles. "I want to live in a world where people are genetically modifying themselves," he told FastCompany. "I think this is, like, literally, a new era of human beings," he mused to CBS in November. "It's gonna create a whole new species of humans."
Nor does he deign to conceal his tactics. The webpage of the company he launched to sell DIY gene-editing kits (which is advised by celebrity geneticist George Church) says that Zayner is "constantly pushing the boundaries of Science outside traditional environments." He is more explicit when performing: "Yes I am a criminal. And my crime is that of curiosity," he said last August to a biohacker audience in Oakland, which according to Gizmodo erupted in applause.
Regrettably, Zayner, along with some other biohackers and their defenders in the mainstream scientific world, appear to have given little thought to whether curiosity should be bound in any way by care for social consequence.
In December, the FDA issued a brief statement warning against using DIY kits for self-administered gene editing.
Though what's most directly at risk in Zayner's self-enhancement hack is his own safety, his bad-boy celebrity status is likely to encourage emulation. A few weeks after his San Francisco performance, 27-year-old Tristan Roberts took to Facebook Live to give himself a DIY gene modification injection to keep his HIV infection in check, because he doesn't like taking the regular medications that prevent AIDS. Whatever it was that he put into his body was provided by a company that Gizmodo describes as a "mysterious biotech firm with transhumanist leanings."
Zayner doesn't outright provide DIY gene hacks to others. But among his company's offerings are a free DIY Human CRISPR Guide and a $20 CRISPR-Cas9 plasmid that targets the human myostatin gene – the one that Zayner said he was targeting to make his muscles grow. Presumably to fend off legal problems, the product page says: "This product is not injectable or meant for direct human use" – a label as toothless as the fine print on cigarette packages that breaks the news that smoking causes cancer.
Some scientists warn that Zayner's style of biohacking carries considerable dangers. Microbiologist Brian Hanley, himself a self-experimenter who now opposes "biohacking humans," focuses on the technical difficulty of purifying what's being injected. "Screwing up can kill you from endotoxin," he says. "If you get in trouble, call me. I will do my best to instruct the physician how to save your life….But I make no guarantees you will survive."
Hanley also commented on the likely effectiveness of Zayner's effort: "Either Josiah Zayner is ignorant or he is deliberately misleading people. What he suggests cannot work as advertised."
Ensuring the safety and effectiveness of medical drugs and devices is the mandate of the US Food and Drug Administration. In December, the agency issued a brief statement warning against using DIY kits for self-administered gene editing, and saying flat out that selling them is against the law.
The stem cell field provides an unfortunate model of what can go wrong.
Zayner is dismissive of the safety risks. He asks in a Buzzfeed article whether DIY CRISPR should be considered more harmful than smoking or chemotherapy, "legal and socially acceptable activities that damage your genes." This is a strange line of argument, given the decades-long battles with the tobacco industry to raise awareness about smoking's significant harms, and since the side effects of chemotherapy are typically not undertaken by choice.
But the implications of what Zayner, Roberts, and some of their fellow biohackers are promoting ripple well beyond direct harms to individuals. Their rhetoric and vision affect the larger project of biomedicine, and the fraught relationships among drug researchers, pharmaceutical companies, clinical trial subjects, patients, and the public. Writing in Scientific American, Eleanor Pauwels of the Wilson Center, who is sympathetic to biohacking, lists the down sides: "blurred boundaries between treatments and self-experimentation, peer pressure to participate in trials, exploitation of vulnerable individuals, lack of oversight concerning quality control and risk of harm, and more."
These prospects are germane to the current state of human gene editing. After decades of dashed hopes, including deaths of research subjects, "gene therapy" may now be close to deserving the promise in its name. But with safety and efficacy still being evaluated, it's especially crucial to be honest about limitations as well as possibilities.
The stem cell field provides an unfortunate model of what can go wrong. Fifteen years ago, scientists, patient advocates, and even politicians routinely indulged in wildly over-optimistic enthusiasm about the imminence of stem cell therapies. That binge of irresponsible promotion helped create the current situation of widespread stem cell fraud: hundreds of clinics in the US alone selling unproven treatments to unsuspecting and sometimes desperate patients. Many have had their wallets lightened; some have gone blind or developed strange tumors that doctors have never before seen. The FDA is scrambling to address this still-worsening situation.
Zayner-style biohacking and promotion may also impact the ongoing controversy about whether new gene editing tools should be used in human reproduction to pre-determine the traits of future children and generations. Much of the widespread opposition to "human germline modification" is grounded in concern that it would lead to a society in which real or purported genetic advantages, marketed by fertility clinics to affluent parents, would exacerbate our already shameful levels of inequality and discrimination.
With powerful new technologies increasingly shaping the world, there's a lot riding on our capacity to democratize science. But as a society we don't yet have much practice at it.
Yet Zayner is all for it. In an interview in The Guardian, he comments, "DNA defines what a species is, and I imagine it wouldn't be too long into the future when the human species almost becomes a new species because of these modifications." He notes in a blog post, "We want to grow as a species and maybe change as a species. Whether that is curing disease or immortality or mutant powers is up to you."
This brings us back to Zayner's claim that he is working to democratize science.
The conviction that gene editing involves social and political challenges, not just technical matters, has been voiced at all points on the spectrum of perspective and uncertainty. But Zayner says there's been enough talk. "I want people to stop arguing about whether it's okay to use CRISPR or not use CRISPR….It's too late: I already made the choice for you. Argument over. Let's get on with it now. Let's use this to help people. Or to give people purple skin." (Emphasis added, in case there's any doubt about Zayner's commitment to democracy.)
With powerful new technologies increasingly shaping the world, there's a lot riding on our capacity to democratize science. But as a society we don't yet have much practice at it. In fact, we're not very sure what it would look like. It would clearly mean, as Arizona State University political scientist David Guston puts it, "considering the societal outcomes of research at least as attentively as the scientific and technological outputs." It would need broad participation and demand hard work.
The involvement of serious citizen scientists in such efforts, biohackers included, could be a very good thing. But Zayner's contributions to date have not been helpful.
[Ed. Note: Check out Zayner's perspective: "Genetic Engineering for All: The Last Great Frontier of Human Freedom." Then follow LeapsMag on social media to share your opinion.]
The rise of remote work is a win-win for people with disabilities and employers
Disability advocates see remote work as a silver lining of the pandemic, a win-win for adults with disabilities and the business world alike.
Any corporate leader would jump at the opportunity to increase their talent pool of potential employees by 15 percent, with all these new hires belonging to an underrepresented minority. That’s especially true given tight labor markets and CEO desires to increase headcount. Yet, too few leaders realize that people with disabilities are the largest minority group in this country, numbering 50 million.
Some executives may dread the extra investments in accommodating people’s disabilities. Yet, providing full-time remote work could suffice, according to a new study by the Economic Innovation Group think tank. The authors found that the employment rate for people with disabilities did not simply reach the pre-pandemic level by mid-2022, but far surpassed it, to the highest rate in over a decade. “Remote work and a strong labor market are helping [individuals with disabilities] find work,” said Adam Ozimek, who led the research and is chief economist at the Economic Innovation Group.
Disability advocates see this development as a silver lining of the pandemic, a win-win for adults with disabilities and the business world alike. For decades before the pandemic, employers had refused requests from workers with disabilities to work remotely, according to Thomas Foley, executive director of the National Disability Institute. During the pandemic, "we all realized that...many of us could work remotely,” Foley says. “[T]hat was disproportionately positive for people with disabilities."
Charles-Edouard Catherine, director of corporate and government relations for the National Organization on Disability, said that remote-work options had been advocated for many years to accommodate disabilities. “It’s a little frustrating that for decades corporate America was saying it’s too complicated, we’ll lose productivity, and now suddenly it’s like, sure, let’s do it.”
The pandemic opened doors for people with disabilities
Early in the pandemic, employment rates dropped for everyone, including people with disabilities, according to Ozimek’s research. However, these rates recovered quickly. In the second quarter of 2022, people with disabilities aged 25 to 54, the prime working age, are 3.5 percent more likely to be employed, compared to before the pandemic.
What about people without disabilites? They are still 1.1 percent less likely to be employed.
These numbers suggest that remote work has enabled a substantial number of people with disabilities to find and retain employment.
“We have a last-in, first-out labor market, and [people with disabilities] are often among the last in and the first out,” Ozimek says. However, this dynamic has changed, with adults with disabilities seeing employment rates recover much faster. Now, the question is whether the new trend will endure, Ozimek adds. “And my conclusion is that not only is it a permanent thing, but it’s going to improve.”
Gene Boes, president and chief executive of the Northwest Center, a Seattle organization that helps people with disabilities become more independent, confirms this finding. “The new world we live in has opened the door a little bit more…because there’s just more demand for labor.”
Long COVID disabilities put a premium on remote work
Remote work can help mitigate the impact of long COVID. The U.S. Centers for Disease Control and Prevention reports that about 19 percent of those who had COVID developed long COVID. Recent Census Bureau data indicates that 16 million working age Americans suffer from it, with economic costs estimated at $3.7 trillion.
Certainly, many of these so-called long-haulers experience relatively mild symptoms - such as loss of smell - which, while troublesome, are not disabling. But other symptoms are serious enough to be disabilities.
According to a recent study from the Federal Reserve Bank of Minneapolis, about a quarter of those with long COVID changed their employment status or working hours. That means long COVID was serious enough to interfere with work for 4 million people. For many, the issue was serious enough to qualify them as disabled.
Indeed, the Federal Reserve Bank of New York found in a just-released study that the number of individuals with disabilities in the U.S. grew by 1.7 million. That growth stemmed mainly from long COVID conditions such as fatigue and brain fog, meaning difficulties with concentration or memory, with 1.3 million people reporting an increase in brain fog since mid-2020.
Many had to drop out of the labor force due to long COVID. Yet, about 900,000 people who are newly disabled have managed to continue working. Without remote work, they might have lost these jobs.
For example, a software engineer at one of my client companies has struggled with brain fog related to long COVID. With remote work, this employee can work during the hours when she feels most mentally alert and focused, even if that means short bursts of productivity throughout the day. With flexible scheduling, she can take rests, meditate, or engage in activities that help her regain focus and energy. Without the need to commute to the office, she can save energy and time and reduce stress, which is crucial when dealing with brain fog.
In fact, the author of the Federal Reserve Bank of New York study notes that long COVID can be considered a disability under the Americans with Disability Act, depending on the specifics of the condition. That means the law can require private employers with fifteen or more staff, as well as government agencies, to make reasonable accommodations for those with long COVID. Richard Deitz, the author of this study, writes in the paper that “telework and flexible scheduling are two accommodations that can be particularly beneficial for workers dealing with fatigue and brain fog.”
The current drive to return to the office, led by many C-suite executives, may need to be reconsidered in light of legal and HR considerations. Arlene S. Kanter, director of the disability law and policy program at the Syracuse University College of Law, said that the question should depend on whether people with disabilities can perform their work well at home, as they did during Covid outbreaks. “[T]hen people with disabilities, as a matter of accommodation, shouldn’t be denied that right,” Kanter said.
Diversity benefits
But companies shouldn’t need to worry about legal regulations. It simply makes dollars and sense to expand their talent pool by 15% of an underrepresented minority. After all, extensive research shows that improving diversity boosts both decision-making and financial performance.
Companies that are offering more flexible work options have already gained significant benefits in terms of diverse hires. In its efforts to adapt to the post-pandemic environment, Meta, the owner of Facebook and Instagram, decided to offer permanent fully remote work options to its entire workforce. And according to Meta chief diversity officer Maxine Williams, the candidates who accepted job offers for remote positions were “substantially more likely” to come from diverse communities: people with disabilities, Black, Hispanic, Alaskan Native, Native American, veterans, and women. The numbers bear out these claims: people with disabilities increased from 4.7 to 6.2 percent of Meta’s employees.
Having consulted for 21 companies to help them transition to hybrid work arrangements, I can confirm that Meta’s numbers aren’t a fluke. The more my clients proved willing to offer remote work, the more staff with disabilities they recruited - and retained. That includes employees with mobility challenges. But it also includes employees with less visible disabilities, such as people with long COVID and immunocompromised people who feel reluctant to put themselves at risk of getting COVID by coming into the office.
Unfortunately, many leaders fail to see the benefits of remote work for underrepresented groups, such as those with disabilities. Some even say the opposite is true, with JP Morgan CEO Jamie Dimon claiming that returning to the office will aid diversity.
What explains this poor executive decision making? Part of the answer comes from a mental blindspot called the in-group bias. Our minds tend to favor and pay attention to the concerns of those in the group of people who seem to look and think like us. Dimon and other executives without disabilities don’t perceive people with disabilities to be part of their in-group. They thus are blind to the concerns of those with disabilities, which leads to misperceptions such as Dimon’s that returning to the office will aid diversity.
In-group bias is one of many dangerous judgment errors known as cognitive biases. They impact decision making in all life areas, ranging from the future of work to relationships.
Another relevant cognitive bias is the empathy gap. This term refers to our difficulty empathizing with those outside of our in-group. The lack of empathy combines with the blindness from the in-group bias, causing executives to ignore the feelings of employees with disabilities and prospective hires.
Omission bias also plays a role. This dangerous judgment error causes us to perceive failure to act as less problematic than acting. Consequently, executives perceive a failure to support the needs of those with disabilities as a minor matter.
Conclusion
The failure to empower people with disabilities through remote work options will prove costly to the bottom lines of companies. Not only are limiting their talent pool by 15 percent, they’re harming their ability to recruit and retain diverse candidates. And as their lawyers and HR departments will tell them, by violating the ADA, they are putting themselves in legal jeopardy.
By contrast, companies like Meta - and my clients - that offer remote work opportunities are seizing a competitive advantage by recruiting these underrepresented candidates. They’re lowering costs of labor while increasing diversity. The future belongs to the savvy companies that offer the flexibility that people with disabilities need.