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The Man Who Changed Human DNA Forever—And Won't Stop
In December 2018, a soft-spoken Chinese scientist walked onto a stage in Hong Kong and casually announced that he'd altered the foundation of human existence. He Jiankui confirmed what media outlets had been whispering about: he'd created the world's first gene-edited babies. Not one. Three.
Two little girls—whom he named Lulu and Nana—and a third child were born with permanent modifications to their genomes designed to protect them from HIV infection. The edits weren't temporary fixes. They were heritable changes, meaning these modifications would pass to future generations, spreading through the human germline like digital code written directly into biology.
The global scientific community didn't applaud. It erupted. Within weeks, He faced international condemnation. China's government banned reproductive genome editing outright. A court sentenced him to three years in prison in 2020. For most people, that would be the end of the story. Burned bridges, ruined career, cautionary tale.
But He Jiankui isn't most people.
Since his release in 2022, he's rebuilt his life in south Beijing. He's opened a new laboratory. He's been talking to investors—wealthy people who apparently donate money to his work regularly, week after week. And now, in 2025, he's announced his next target: Alzheimer's disease. He wants to edit human embryos to prevent cognitive decline before it starts.
This isn't a man who learned his lesson. This is a man who believes the lesson itself was wrong.
What follows is the story of how one scientist's ambition reshaped the ethics of medicine, why gene editing remains simultaneously one of humanity's greatest tools and most dangerous weapons, and what happens when the rules everyone else follows don't seem to apply.
TL; DR
- He Jiankui created the first gene-edited babies in 2018, modifying three children to resist HIV infection through permanent germline editing
- He served three years in prison, and China banned reproductive genome editing—but restrictions don't exist everywhere
- He's now planning Alzheimer's prevention embryo editing, claiming funding from wealthy donors and potential trial sites in South Africa and Hong Kong
- Global gene-editing governance remains fragmented, with different countries, ethics boards, and regulatory frameworks creating jurisdictional loopholes
- The core tension persists: How do we balance preventing disease against designer babies, eugenics concerns, and unknown long-term consequences of heritable genetic changes?
Estimated data shows a balanced distribution of funding sources, with donations and seed money each contributing significantly, alongside a major donor.
Understanding Germline Gene Editing: The Science Behind the Controversy
Before we can understand why He Jiankui's work sparked such outrage, we need to understand what he actually did—and why it's fundamentally different from other genetic therapies.
Gene editing itself isn't new. Scientists have been modifying genes since the 1970s. The real breakthrough came with CRISPR-Cas 9, a tool that works like genetic scissors. You load it with DNA instructions, it finds the exact spot in the genome you want to edit, and it cuts. Then the cell repairs the break, either by deleting genes or inserting new ones. The technology is elegant, relatively cheap, and increasingly accessible. Labs worldwide use it routinely.
But there's a crucial distinction: somatic gene editing versus germline gene editing.
Somatic editing modifies genes in specific body cells—your lungs, liver, muscles, whatever. These changes affect only you. They don't pass to your children. You get a gene therapy injection, the cells in that tissue get edited, and future generations are untouched. This is what most approved gene therapies do. Zolgensma treats spinal muscular atrophy by editing motor neurons. Luxturna treats inherited retinal disease by editing photoreceptor cells. These are real, approved treatments that save lives.
Germline editing is different. It's the nuclear option. You're editing embryos, sperm, or egg cells—the reproductive cells that become your children. Any change you make becomes permanent. It gets passed down. It spreads through the population like a genetic wave.
He's work involved germline editing. He modified the CCR5 gene, which codes for a receptor that HIV uses to enter cells. People with a specific mutation in this gene—CCR5-Delta 32—are naturally resistant to HIV. They're essentially immune. He tried to create this same mutation in the three babies by editing their embryos before they were born.
The science was bold. The execution was messy. And the implications were staggering.
Why did this create such fury? Because He didn't just edit genes. He edited the rules of how science works.
Lack of consent and genetic stratification are among the top ethical concerns in germline gene editing. Estimated data based on typical ethical discussions.
The Ethics Explosion: Why Scientists Called It "Reckless"
The international scientific community had a pre-established consensus: don't do this yet. In 2017, just a year before He's announcement, the National Academies of Sciences issued detailed guidelines. Gene editing in humans for treating disease? Maybe, if done carefully. Editing embryos for reproductive purposes? Not yet. The technology wasn't ready. We didn't understand off-target effects, mosaicism, or long-term consequences.
He did it anyway.
What made it worse: he didn't run it by international oversight bodies. He didn't publish preliminary data. He didn't alert his university. He just did it, then announced it to the world as a fait accompli. The babies already existed. You couldn't un-edit them. This wasn't a proposal or a pilot program. It was a done deal, and everyone else was scrambling to understand what had actually happened.
The backlash was immediate and visceral. Scientists published open letters condemning him. His university initially said they had no knowledge of the experiment. The Chinese government launched an investigation. Colleagues who'd worked with him felt betrayed—some had explicitly warned him against this.
But underneath the procedural outrage was a deeper ethical quagmire: even if he'd followed all the rules, should anyone be doing this?
There are several concerns that persist, even with careful oversight:
Off-target editing: CRISPR's scissors don't always cut exactly where you tell them to. They can make unintended changes elsewhere in the genome. We can detect these, but we can't predict all of them. He's edited babies might have unknown genetic changes that don't manifest until later in life—or in their children.
Mosaicism: Not all cells in an embryo get edited. Some cells might have the edit, others might not. This creates a patchwork organism with mixed genotypes. We still don't fully understand how this plays out.
Unknown long-term effects: We don't know what happens in 30 years. In 50 years. When these children have their own children. Germline editing is playing with humanity's genetic future based on incomplete information.
Equity and access: If germline editing becomes viable, who gets it? Only the wealthy? This creates genetic stratification—actual biological classes of enhanced and non-enhanced humans.
The slippery slope: Once you edit for HIV resistance, why not edit for intelligence? Height? Athletic ability? Where's the line between therapy and enhancement? How do you draw it ethically?
He's response to these concerns has been dismissive. He believes the criticism comes from Western bias. In interviews, he's suggested that restrictions on embryo editing are themselves unethical—preventing sick children from being born healthy. He's framed it as a moral imperative.
The Prison Years: What Happened After 2018
After the Hong Kong announcement, things moved quickly in China.
The government investigated. Scientists testified about what he'd done. Media coverage oscillated between calling him a visionary and a reckless megalomaniac. He initially defended his work, then seemed to retreat. By early 2020, he was charged with practicing medicine illegally and violating regulations on research involving human subjects.
In December 2020, a Chinese court convicted him. He received a three-year prison sentence. The court also levied a fine of about $430,000. The sentence was substantial—not lenient, but not harsh for the magnitude of what he'd done. In some countries, similar charges might have resulted in longer incarceration.
He spent approximately three years in a Chinese detention facility. Few details emerged about those years. He didn't give interviews. The media attention faded. For most of the world, he became a historical figure—the cautionary tale of what happens when a scientist ignores ethics.
Then in 2022, he was released.
What's striking is that his release didn't seem to involve remorse or reformation. He didn't emerge contrite. He didn't apologize. Instead, he seemed to emerge with his conviction strengthened. In social media posts, he began discussing his work in terms that suggested he viewed his imprisonment as an injustice, not a consequence he deserved.
The China ban on germline editing remained in place. But He seemed unconcerned about working within those constraints. Instead, he began laying groundwork for international work.
The timeline highlights key events from the announcement in 2018, through the trial and imprisonment in 2020, to the release in 2022. Estimated data based on narrative.
Rebuilding in the Shadows: The New Lab and the Funding Question
Since 2022, He has been remarkably active—far more active than most people convicted of serious scientific misconduct typically are.
He's set up a new independent laboratory in south Beijing. He's claimed to be working on gene therapy for Duchenne muscular dystrophy—a serious muscle-wasting disease. He says a pharmaceutical company has picked up this research, though he hasn't published results or provided specifics about which company.
Then there's the funding question, which is perhaps the most troubling part of this story.
He claims to have raised 50 million yuan—approximately $7 million USD. He says this comes from "donations" and "seed money" from various investors. When asked about the nature of these investments, he's been characteristically vague, but he's also stated something remarkably candid: investors contact him constantly. Every week, he says, someone arrives in Beijing wanting to invest.
Who are these people? He hasn't named them. He's mentioned that one major donor is an entrepreneur with a family history of disease—though he won't specify what disease, citing "privacy."
This raises an uncomfortable question: if He Jiankui is considered a cautionary tale in the West, why are there apparently wealthy individuals eager to fund his work? Either these are people who don't know his history (unlikely, given how famous he is), or they're people who don't care, or they actively agree with his approach.
The most likely answer is some combination of the latter two.
He's claimed funding of
The question becomes: where will this clinical trial happen? China banned reproductive germline editing. Most Western countries have restrictions. But not everywhere.
The Alzheimer's Plan: A New Mission or the Same Ambition?
He's announced his newest project: preventing Alzheimer's disease through germline editing.
Specifically, he's focused on the APP-A673T mutation. This is a real genetic variant identified in an Icelandic population. People who carry this mutation have significantly lower risk of Alzheimer's disease and, intriguingly, tend to live longer than average. They're cognitively healthier in old age.
The logic is straightforward: if we could introduce this protective mutation into embryos, we could create children who'd be free of Alzheimer's risk. They'd inherit longevity and cognitive protection as a genetic gift.
On the surface, this sounds almost benevolent. Alzheimer's is devastating. It destroys minds, families, and healthcare systems. Preventing it would be tremendous. But this is where He's framing becomes particularly clever—and potentially dangerous.
He's positioning this as therapeutic intervention, not enhancement. Preventing disease is ethically different from enhancing traits. We can justify medical treatments we might not justify cosmetic modifications. By focusing on Alzheimer's prevention, He creates a sympathetic framing.
But it's more complicated than that.
First, the science isn't certain. The APP-A673T mutation correlates with Alzheimer's resistance in that specific Icelandic population. We don't know if introducing it into a different genetic background, in different environments, with different lifestyles, would have identical protective effects. Genetics doesn't work like simple code where one mutation equals one outcome. Everything interacts.
Second, this is still germline editing. It still changes human DNA permanently. It still raises all the questions about off-target effects, mosaicism, and long-term consequences.
Third—and this is critical—He's explicitly stated he wants to eventually move to "hundreds of gene-edited babies." This isn't a research project. It's a deployment plan. He's talking about creating a cohort of genetically modified humans at scale.
When asked if this would eventually include genetic enhancement rather than just disease prevention, He has been notably non-committal. He's suggested that the distinction is artificial—that by preventing disease, you're already enhancing, and the line is impossible to draw cleanly.
This is arguably the most honest thing he's said, because it exposes the fundamental problem with germline editing: once you start deciding which genetic variations are "better," you're not just practicing medicine anymore. You're practicing eugenics.
Somatic gene editing affects only the individual and is widely used, while germline editing has broader implications and higher ethical concerns. Estimated data based on typical discussions.
The Eugenics Question: Why This Matters
He himself raised the specter of eugenics in recent interviews, but he did it backward. He claimed that Silicon Valley's approach to genetic research—specifically gene therapy and biotech investment—constitutes a "Nazi eugenic experiment." He positioned himself as the victim of eugenic thinking, not the perpetrator.
This rhetorical move is significant. It attempts to flip the script. Instead of He being the one engaging in eugenic thinking, he's claiming the Western establishment is, and he's fighting against it.
It's a clever argument, but it's also backwards.
Eugenics, historically, was the idea that some genetic traits were inherently superior and should be propagated, while inferior traits should be eliminated. It was used to justify horrific atrocities. The Nazi regime didn't invent eugenic thinking, but they industrialized it, making it the foundation of genocide.
The concern with germline editing isn't that we're trying to help sick people. It's that once you start choosing which genetic traits to propagate, you're making value judgments about what humans should be like. You're deciding, at a molecular level, which lives are worth creating.
He's work doesn't prevent this. It exemplifies it.
The CCR5 mutation he edited into the first babies? That's not universally protective. In some environments, it might have trade-offs we don't fully understand. The Alzheimer's mutation? Same issue. We're making irreversible decisions about human genetics based on incomplete information, driven by someone's vision of what humans should be.
That's eugenic thinking, regardless of how sympathetically you frame it.
But here's the tension that makes this complicated: our entire medical system is built on making value judgments about which lives are worth saving, which diseases are worth treating, which interventions are worth pursuing. In that sense, all medicine involves some form of selective thinking about human wellbeing.
The difference is scope and permanence. Treat a sick person? That's medicine. Edit their germline to make future generations conform to your vision? That's something else entirely.
Global Gene-Editing Governance: The Regulatory Maze
One reason He remains undeterred is because the global governance of gene editing is fragmented and inconsistent.
In the United States, germline editing for reproductive purposes is not explicitly banned federally, but it's heavily restricted. The FDA doesn't regulate it, the NIH won't fund it, and Congress has repeatedly blocked funding through riders in appropriations bills. In practice, it's off-limits, but through funding mechanisms and agency guidance rather than explicit law.
Europe is more restrictive. Many European countries have explicit bans on reproductive germline editing in their national laws.
China has banned it nationally—partly in response to He's work.
But there are gaps. South Africa, until recently, didn't have clear restrictions. Some countries have minimal oversight. And in some jurisdictions, ambiguity creates opportunity.
He has stated he wanted to move to Austin, Texas, but can't because he doesn't have a passport. He's mentioned interest in Hong Kong, which has different regulations than mainland China. And he's indicated he's already had conversations with people in South Africa about conducting human trials there.
In August 2025, South Africa actually did remove language from its national ethics guidelines that some had interpreted as potentially allowing heritable genome editing. But this move came too late to close what might have been a jurisdiction He was considering.
The bigger pattern is clear: He is actively shopping for a jurisdiction where his work might be legal or tolerated. It's regulatory arbitrage applied to human genetics.
This creates a crucial problem: scientific ethics can't exist in isolation from governance. If you tell a researcher "you can't do this in your country," they can potentially move to a country where it's tolerated or legal. Unless there's genuine international consensus—and enforcement mechanisms—loopholes will exist.
The international scientific community has tried to create consensus. Organizations like the World Health Organization have issued guidelines. The International Society for Stem Cell Research has published recommendations. But these are guidance documents, not law. They rely on voluntary compliance. And for someone like He, who's already demonstrated willingness to violate professional norms, voluntary guidelines have limited power.
The bar chart illustrates the estimated impact scores of various ethical concerns associated with human gene editing, highlighting 'Lack of Oversight' as the most critical issue. Estimated data.
The Three Gene-Edited Babies: Seven Years Later
What happened to Lulu, Nana, and the third child? This question matters because it's the actual evidence of whether He's work was successful, harmful, or somewhere in between.
He claims they're healthy. He says he maintains regular contact with their families. He's stated they've attended primary school and that "their families are very happy with it." He's suggested they're normal, healthy children with no complications.
But here's the problem: we can't independently verify any of this. The children's identities are protected. We haven't seen medical records. Independent researchers haven't conducted evaluations. We have only He's word.
This is actually a significant ethical issue in itself. These are the world's first gene-edited humans, and they're essentially hidden from scientific scrutiny. Their long-term health outcomes aren't being transparently tracked. We're relying on He's characterization of their wellbeing.
In science, reproducibility and transparency are fundamental. You can't have claims that are untestable because they're hidden. You can't have the world's most significant genetic experiment being opaque.
In one interview, He was asked if the children know they were gene-edited. He didn't answer directly. That's telling. These are real children who carry permanent genetic modifications they didn't consent to, and we don't even know if they're aware of their own genetic status.
The Duchenne Muscular Dystrophy Project: Real Work or Rehabilitation?
He's also claimed work on gene therapy for Duchenne muscular dystrophy (DMD), a severe progressive muscle disease affecting boys, typically manifesting in early childhood.
He says a pharmaceutical company has taken on this research. He hasn't published results. He hasn't provided details about which company, what stage of development, or what outcomes they're seeing.
This could be legitimate work. DMD is a devastating disease, and gene therapy for it is an active area of research globally. Several approaches show promise. If He's involved in that ecosystem, it's potentially valuable.
But it's also worth noting: focusing on gene therapy for existing patients (somatic therapy) is significantly less controversial than germline editing. It's easier to get approved, easier to fund, and easier to defend ethically. If He is working on DMD, it might represent a legitimate pivot to less controversial work.
Or it might be strategic. It's harder to criticize someone working on treating a devastating childhood disease than someone who wants to edit embryos. Positioning himself as working on DMD could rehabilitate his public image while he pursues more controversial germline work in parallel.
Without published data or transparent partnerships, it's impossible to know which narrative is accurate.
Estimated data suggests a diverse funding ecosystem for controversial science, with venture funds and institutional investors leading the way.
The Funding Ecosystem: Who Invests in Controversial Science?
The fact that He has attracted significant funding—and claims investors contact him regularly—suggests something important about the biotech ecosystem: there's money for almost anything if you look in the right places.
This doesn't require some shadowy conspiracy. Biotech funding is incredibly diffuse. There are thousands of venture funds, angel investors, family offices, and institutional investors looking for opportunities. Some are sophisticated, others are not. Some do due diligence, others don't.
When He says investors contact him weekly, he might be exaggerating for effect. Or he might be truthful. If true, it suggests people willing to fund high-risk, potentially unethical research exist, and they have capital.
He's mentioned that one donor is an entrepreneur with a family history of disease. This hints at a particular motivation: personal desire for genetic enhancement or disease prevention for one's own children. If you're wealthy and you have a genetic disease running through your family, having access to germline editing technology—even underground, even risky—might be appealing.
This connects to a larger pattern in biotech: regulatory arbitrage. Rich people can often access medical treatments unavailable in their home countries. They travel for experimental procedures. They participate in foreign clinical trials. The wealthy have always had access to cutting-edge (and sometimes unproven) medicine.
Germline editing follows this same logic. If it's available somewhere—anywhere—wealthy individuals with genetic concerns might pursue it. He's apparently positioned himself as someone who can provide it.
The Personality Factor: Why He Remains Unmoved by Criticism
One element that's crucial to understanding this story is He himself. He's clearly intelligent, capable of sophisticated research, and committed to his vision. But he's also something else: remarkably indifferent to external criticism.
After his release from prison, most disgraced scientists might emerge humbled. They might publish carefully in peer-reviewed journals. They might collaborate with ethics boards. They might try to rehabilitate their reputation through scrupulous adherence to guidelines.
He instead posted images of himself on social media as "Chinese Darwin," "Oppenheimer in China," and "China's Frankenstein." He sat on a giant throne with prehistoric animals at his feet. He captioned one photo: "I did not violate ethics, I overturned it."
These aren't the statements of someone chastened by criticism. They're the statements of someone who believes he's right and everyone else is wrong. Someone who sees himself as a visionary operating above conventional morality.
This personality type—the conviction that you see something everyone else is too timid or conventional to see—is actually common in transformative scientific work. Some of history's greatest scientists had this quality. The difference is usually accountability and results.
He has neither. His results are hidden. His accountability is nonexistent. And his conviction that he's justified in violating established norms appears unshaken by three years in prison.
That might sound like strength. It also sounds like someone likely to do exactly what he did before: pursue ambitious genetic modification whenever he calculates the risk as acceptable.
Consent, Agency, and the Children Who Can't Choose
Underneath all the governance questions, funding discussions, and technical debates is a simpler ethical problem: these are modifications being made to people who cannot consent.
The three gene-edited babies had no say in having their genomes altered. Neither will any future children born from He's Alzheimer's project. They didn't choose to be genetic experiments. They didn't agree to permanent modifications to their DNA. They simply had those modifications imposed on them by adults making decisions about their genetic futures.
In medicine, we typically require consent from patients. If a treatment is irreversible, we're especially careful about consent. We don't perform permanent surgical modifications on children without explicit medical necessity and detailed family discussion.
Germline editing is the ultimate permanent modification. It affects the person directly and all their descendants. Yet it's imposed without the consent of any of them.
He's response to this is essentially that parents already make all kinds of decisions affecting their children—where they live, what schools they attend, what culture they're raised in. Genetic decisions are just an extension of parental choice.
But there's a meaningful difference. Choosing where your child goes to school can be reversed. Parenting decisions can be adapted. Genetic modifications cannot. Once the CCR5 gene is edited out of Lulu and Nana's germline, it's gone. Their children will inherit the edit. Their children's children will inherit it. It's permanent in a way almost no other parental decision is.
This creates a fundamental problem: you're making irreversible decisions for people who cannot consent, affecting them and all their descendants. In medical ethics, we have a term for this: violating autonomy and imposing harm without consent.
Some might argue that preventing HIV or Alzheimer's justifies this. The disease prevention might outweigh the autonomy violation. But that's a value judgment, not a scientific fact. And it's a value judgment He made unilaterally, without consulting the scientific community, the families affected, or society at large.
The Path Forward: How Could This Actually Happen?
If He is serious about this Alzheimer's project, how would it actually work? He's given clues about his intended path:
Phase 1: Cell lines and animals. He's claimed to be working on human cell lines, mice, and monkey embryos. This phase doesn't require human trials or regulatory approval in most jurisdictions. Lab work on non-human organisms is relatively unregulated compared to human trials. He could continue this indefinitely in Beijing without violating Chinese law, since the ban applies to reproductive germline editing, not research.
Phase 2: Finding a jurisdiction. He's indicated interest in South Africa, Hong Kong, and possibly other locations. He needs a place where germline editing isn't explicitly prohibited or where enforcement is weak. This is plausible—many countries don't have comprehensive legal frameworks for gene editing.
Phase 3: Recruiting participants. Here's where the funding becomes relevant. If He needs to conduct trials, he needs participants—couples willing to have their embryos edited. With $7 million and claims of ongoing investor interest, he could potentially compensate willing participants or partner with fertility clinics in jurisdictions with minimal oversight.
Phase 4: Clinical trials. Once he has edited embryos and willing participants, he'd need to conduct trials—essentially creating pregnancies with edited embryos to see if the modifications work as intended and don't cause harm. This is where actual human germline editing would occur.
Each phase has hurdles. But none are impossible. This isn't theoretical. This is a plausible roadmap He could actually pursue.
The International Scientific Response: Too Little, Too Late?
After the 2018 scandal, the international scientific community strengthened guidance on germline editing. The International Society for Stem Cell Research published recommendations in 2021 calling for international oversight, explicit informed consent requirements, and restrictions on heritable genome editing.
But recommendations aren't law. And enforcement is weak. If a researcher in a permissive jurisdiction decides to proceed anyway, what happens?
Theoretically, scientific journals would refuse to publish results. Collaborators would distance themselves. The researcher would be ostracized from the mainstream scientific community. But they might publish in lower-tier journals or not publish at all. They might collaborate with other researchers willing to work with them. Scientific ostracism, while damaging, doesn't actually stop research.
Looks like the international scientific community is hoping that moral suasion and professional consequences are sufficient deterrents. For someone like He—already imprisoned, already ostracized, already convinced he's right—these penalties might not be sufficiently strong.
This suggests we need stronger mechanisms. Actual international law rather than guidelines. Real enforcement mechanisms. Consequences that extend beyond scientific journals and academic conferences.
But creating such mechanisms requires international cooperation, and on gene editing, that consensus doesn't currently exist.
The Larger Questions: Why This Story Matters Beyond He Jiankui
He's specific actions are troubling. But the larger implications might matter more.
His story is a test case for global scientific governance. It demonstrates that current mechanisms are inadequate. We have guidelines, recommendations, national bans, and professional norms. But someone willing to ignore all of them can apparently continue doing research, attract funding, and potentially conduct human trials in permissive jurisdictions.
This suggests that if germline editing becomes genuinely effective and safe (a big if), there will likely be pressure to allow it. And if one country permits it, others will face pressure to follow, or wealthy citizens will travel to access it. We could see a world where gene editing becomes available through medical tourism, available primarily to the wealthy, fracturing human genetic diversity into enhanced and non-enhanced populations.
Alternatively, we could develop stronger international governance mechanisms, real enforcement, and genuine consensus about what germline editing should and shouldn't be used for. But that requires political will and international cooperation that doesn't currently exist.
He's story also reveals something about how scientific progress actually works: it's not purely driven by evidence and ethics. It's driven by individual ambition, available resources, institutional incentives, and the willingness of some people to accept risk and social consequences in pursuit of their vision.
Understanding this is important because it means that the solution to problematic research isn't just better guidelines or more criticism. It's stronger governance mechanisms, real enforcement, and aligned incentives.
The Children Grow Up: What Happens Next
Lulu, Nana, and the third child are now around seven or eight years old. They're growing up in China, attending school, living lives that would be normal except for the fact that their genomes were permanently modified before they were born.
We don't know what their health status actually is. We don't know if there are any long-term effects. We don't know if they're even aware they were gene-edited. We're essentially conducting a longitudinal study on human germline editing, but it's not a controlled study, it's not transparent, and the subjects can't consent to participating.
In perhaps five to ten years, as they become adolescents, we might learn more about their actual health outcomes. We might discover they're perfectly healthy with no complications. We might discover long-term issues. Either way, we'll be seeing the results of an experiment conducted unethically, without consent, with inadequate oversight.
That's a reality we now have to live with.
Looking Forward: The Future of Germline Editing
Where does this all go?
In the short term, He will likely continue his work. He has funding, motivation, and apparently access to jurisdictions where he can continue research. Whether he'll successfully conduct human trials remains to be seen, but it's not impossible.
In the medium term, the scientific community will continue grappling with governance questions. Countries will probably strengthen restrictions. International organizations will likely issue stronger recommendations. But enforcement will remain weak.
In the longer term, if germline editing technology improves and becomes safer, there will be real pressure to allow it. Medical professionals will argue that preventing serious diseases like Alzheimer's or Duchenne muscular dystrophy is justified. Parents will want options. Biotech companies will want markets. Governments will want to avoid being "behind" in genetic technology.
Some countries might allow it. Others won't. We'll end up with a patchwork of permissive and restrictive jurisdictions. The wealthy will have access. The poor won't. We might see actual biological genetic stratification in human populations.
That's not inevitably what happens. We could choose differently. We could develop strong international governance mechanisms. We could reach consensus about appropriate uses of germline editing. We could prioritize equity and justice over technological capability.
But that requires political will and international cooperation. He's story suggests we might not have enough of either.
FAQ
What is germline gene editing?
Germline gene editing is the modification of DNA in reproductive cells (sperm, eggs, or embryos) to create permanent, heritable genetic changes that can be passed to future generations. Unlike somatic gene therapy, which affects only the individual being treated, germline editing creates changes that persist across generations and affect the entire human genome of the individual and all their descendants. He Jiankui's creation of the first gene-edited babies involved using CRISPR-Cas 9 to modify the CCR5 gene in human embryos before implantation.
Why did He Jiankui create gene-edited babies if it was so controversial?
He believed he was preventing HIV infection in the babies by introducing a protective genetic mutation found naturally in some populations. He saw this as medical progress and disease prevention. However, he conducted the research without adequate oversight, didn't follow established scientific guidelines, and didn't obtain proper ethical approval—essentially making an individual decision to permanently alter human germlines without broader scientific or societal consensus. His justification has remained relatively consistent: he views critics as being overcautious about technology that could save lives from infectious disease.
What are the main ethical concerns with germline editing?
The primary ethical issues include: lack of consent from the people receiving the modifications, unknown long-term consequences of genetic changes, potential off-target effects where CRISPR cuts DNA in unintended locations, mosaicism where not all cells in the embryo receive the edit, risk of creating genetic stratification where only wealthy people access genetic modifications, and the fundamental question of whether anyone should be making irreversible genetic decisions for future generations. Additionally, there's the slippery slope from treating disease to enhancing traits, which raises concerns about eugenics and what qualities society decides are "worth" engineering into humans.
Where is germline editing currently legal?
Germline editing for reproductive purposes is explicitly banned or heavily restricted in most developed countries, including the United States, most of Europe, China, and Japan. However, governance is fragmented globally—some countries have no explicit legal restrictions, creating potential jurisdictional gaps. He has indicated interest in conducting trials in South Africa and Hong Kong, though South Africa removed permissive language from its ethics guidelines in August 2025. International organizations recommend against heritable germline editing, but these are guidelines, not law, and enforcement mechanisms are weak.
What happened to the three gene-edited babies?
According to He's claims, Lulu, Nana, and a third child are now seven to eight years old, healthy, attending school, and living normal lives. However, these claims are unverified—we have no independent medical records, no transparent health monitoring, and no scientific verification of He's characterizations. The children's actual long-term health status remains unknown to the broader scientific community, and it's unclear whether they're even aware they were gene-edited. This lack of transparency and oversight is itself a significant ethical problem.
Could He Jiankui's Alzheimer's prevention project actually happen?
It's plausible but would require overcoming significant hurdles. He would need to find a jurisdiction where germline editing isn't explicitly prohibited, recruit willing participants (couples seeking embryo editing), conduct clinical trials with oversight that's minimal enough to permit the work, and maintain funding. While each individual element faces obstacles, none are impossible. The fact that He has already attracted millions in funding and claims ongoing investor interest suggests the pathway isn't purely theoretical—it's a realistic concern within the biotech and medical ethics communities.
Why doesn't He face stronger consequences for his 2018 work?
He did face consequences—he was imprisoned for three years and fined approximately $430,000 in China. However, the international scientific community relies primarily on reputation damage, journal publication refusal, and professional ostracization for enforcement. These mechanisms are weak deterrents for someone already imprisoned and genuinely convinced their work is justified. There are no international laws with real enforcement mechanisms that would prevent Him from conducting research in permissive jurisdictions, which is why stronger governance mechanisms are needed but don't currently exist.
Is there international consensus on germline editing?
No. While most developed countries restrict or ban germline editing, and international scientific organizations recommend against it, there's no binding international law or unified enforcement mechanism. The governance landscape is fragmented, with different countries having different restrictions, some having minimal oversight, and some having ambiguous regulations. This fragmentation creates opportunities for researchers facing restrictions at home to pursue work in permissive jurisdictions—exactly the concern with He's plans.
What's the difference between germline editing and somatic gene therapy?
Somatic gene therapy modifies genes in specific body cells (like lung or muscle cells) to treat existing disease in one individual. These changes don't affect reproductive cells and aren't passed to future generations. It's a one-time medical intervention. Germline editing modifies reproductive cells or embryos, creating permanent changes that affect all cells in the edited individual and pass to all future descendants. Germline editing is like writing code that executes forever and in every copy of your offspring, while somatic therapy is like fixing a specific computer's program without affecting the code on other machines.
What would stronger governance of germline editing actually look like?
Effective governance would require: explicit international law banning heritable germline editing (not just guidelines), enforcement mechanisms with real consequences for violations, transparent international oversight of any research involving embryo editing, requirements for informed consent and ethics board approval in all jurisdictions, and coordination to prevent jurisdictional arbitrage where researchers move to permissive countries. Some proposals suggest creating international registries of germline-edited individuals, independent monitoring of outcomes, and serious legal consequences (imprisonment, not just fines) for violations. However, creating such mechanisms requires international cooperation and political will that doesn't currently exist.
Conclusion: The Unresolved Tension
He Jiankui's story doesn't have a neat ending because the underlying questions it raises remain unresolved.
We want to prevent suffering. Alzheimer's is devastating. HIV is devastating. The diseases He wants to target through germline editing are real problems that cause real harm. From that perspective, his work seems almost noble—using powerful technology to protect future generations from terrible diseases.
But we also recognize that making irreversible genetic modifications to people who can't consent, without adequate scientific validation or ethical oversight, is wrong. We've learned from eugenics movements in the 20th century that letting individuals or governments make broad genetic decisions about human populations leads to atrocities.
These two positions are in genuine tension. We can't simultaneously say "gene editing should be available to prevent disease" and "we must prevent anyone from editing genes without perfect oversight." The technology exists. The capability is real. The desire to use it is increasing.
What we don't have is the governance framework to navigate this tension responsibly.
He Jiankui is emblematic of that failure. He did what he did partly because he could, partly because he believed he was right, and partly because nobody had created robust enough mechanisms to stop him. Three years in prison didn't deter him. Scientific criticism didn't convince him. International condemnation didn't redirect his ambitions.
He is now out, funded, and planning his next moves. Somewhere, fertile couples might be willing to participate in his experiments. Somewhere, jurisdictions might permit his work. Somewhere, people might volunteer their embryos to become part of his vision of humanity's genetic future.
The question isn't whether He will continue. It's whether we'll finally create the governance mechanisms to manage germline editing responsibly—or whether we'll continue allowing brilliant, ambitious, unconstrained researchers to make irreversible decisions about humanity's genetic code, one country and one experiment at a time.
Until we resolve that tension, stories like He Jiankui's will keep happening. And the genetic experiments being conducted on people who never consented will keep multiplying.
That's not science. That's not medicine. That's what happens when technology gets ahead of the ethics, governance, and international consensus needed to guide it.
Key Takeaways
- He Jiankui created permanent genetic modifications in three human embryos in 2018, permanently altering their germlines—the DNA that passes to future generations—through unauthorized research
- After three years in prison, He remains unrepentant and is now pursuing Alzheimer's prevention through germline editing, claiming millions in funding from anonymous donors
- Global gene-editing governance is fragmented with explicit bans in developed countries but regulatory gaps elsewhere, enabling potential research in permissive jurisdictions like South Africa and Hong Kong
- The three gene-edited children's actual long-term health outcomes remain unverified and unmonitored, representing an uncontrolled human experiment conducted without transparent oversight
- Germline editing raises fundamental ethical tensions between preventing disease and making irreversible genetic decisions for people who cannot consent, echoing eugenics concerns
