The CRISPR Baby Debate Isn't Over — It's Just Getting Harder

Introduction

In November 2018, the world learned that He Jiankui, a Chinese biophysicist, had used CRISPR-Cas9 to edit the genomes of twin embryos — Lulu and Nana — before implantation. The stated goal was to disable the CCR5 gene and confer resistance to HIV. The announcement was met with near-universal condemnation from the scientific community. He was sentenced to three years in prison, and the incident became shorthand for scientific hubris.

But the story didn't end there. If anything, the questions He Jiankui forced into the open have only grown more complicated. As our understanding of CRISPR technology deepens, as new delivery mechanisms and base-editing tools emerge, and as regulatory bodies around the world attempt to draw lines in the sand, the central ethical tension remains unresolved: When, if ever, is it acceptable to edit the human germline?

The He Jiankui Legacy: What We Learned

The He Jiankui affair was not just a story of one rogue scientist. It exposed systemic failures — in institutional oversight, in the gap between what is technically possible and what is ethically permissible, and in the global governance of emerging biotechnologies.

Subsequent analyses of the edited embryos revealed mosaicism, off-target effects, and incomplete edits. The children did not receive the clean CCR5 knockout that was intended. More troublingly, research published in Nature Medicine (2019) suggested that CCR5-delta32 homozygosity — the very mutation He attempted to create — may be associated with increased susceptibility to West Nile virus and reduced lifespan.

"He Jiankui didn't just break ethical norms. He demonstrated precisely why those norms exist — because the biology is far more complex than any single intervention can account for." — Dr. Kiran Musunuru, University of Pennsylvania

The legacy is paradoxical. He's actions accelerated the global conversation about germline editing governance, but they also created a chilling effect. Legitimate researchers working on somatic gene therapies have reported increased scrutiny and public suspicion, even when their work poses no heritable risks.

The Technological Landscape in 2026

Since 2018, CRISPR technology has evolved dramatically. Base editing, developed by David Liu's lab at the Broad Institute, allows precise single-nucleotide changes without creating double-strand breaks. Prime editing goes further, enabling targeted insertions, deletions, and all twelve possible point mutations with remarkable precision.

These advances are significant because they address some of the safety concerns that plagued first-generation CRISPR-Cas9. Off-target effects are substantially reduced. Delivery mechanisms have improved, with lipid nanoparticles and adeno-associated viruses offering more controlled tissue targeting.

But improved precision doesn't resolve the ethical questions. It sharpens them.

"The better the technology gets, the harder the ethical conversation becomes. When germline editing was dangerous and imprecise, it was easy to say 'not yet.' Now that it's becoming safer, we have to actually decide what we believe." — Dr. Alta Charo, University of Wisconsin

Consider sickle cell disease. Somatic gene therapies like Casgevy (exa-cel), approved by the FDA in 2023, have shown remarkable efficacy in treating existing patients. But they require extracting stem cells, editing them ex vivo, and reinfusing them — a process that is expensive, invasive, and inaccessible to most of the world's sickle cell patients, who live in sub-Saharan Africa.

A germline edit, by contrast, could eliminate the sickle cell mutation from a family line permanently. A single intervention at the embryo stage could prevent lifetimes of suffering across generations. The utilitarian case is powerful. The objections are equally serious.

The Regulatory Patchwork

As of 2026, the global regulatory landscape for germline editing remains fragmented.

Prohibitions: Over 70 countries have laws or policies that prohibit clinical applications of human germline editing. The United Kingdom's Human Fertilisation and Embryology Authority (HFEA) permits research on embryos up to 14 days but bans implantation of edited embryos. Germany's Embryo Protection Act goes further, criminalizing any modification of the germline.

Permissive frameworks: A handful of jurisdictions have begun developing conditional pathways. Singapore's Bioethics Advisory Committee published guidelines in 2025 that outline a potential regulatory pathway for germline editing in cases of severe monogenic disorders, subject to extensive safety data and ethics review. Japan has similarly signaled openness to carefully regulated clinical applications.

The United States: The situation in the US is particularly complex. Congress has maintained a rider on FDA appropriations since 2015 that prohibits the agency from reviewing applications involving heritable genetic modification. This doesn't criminalize the research — it simply prevents regulatory review, creating a paradoxical situation where the work is neither approved nor formally banned.

The WHO's Expert Advisory Committee on Human Genome Editing released an updated governance framework in 2024, calling for an international registry of all germline editing research and recommending that no country permit clinical applications until robust safety data from primate studies is available. But the framework is advisory, not binding.

"We have a patchwork of national regulations trying to govern a technology that doesn't respect borders. An embryo edited in one jurisdiction can be implanted in another. We need governance that matches the scale of the technology." — Dr. Francoise Baylis, Dalhousie University

Treatment vs. Enhancement: The Blurry Line

The most philosophically vexing question in the germline editing debate is where to draw the line between treatment and enhancement.

Most ethicists are comfortable — at least in principle — with the idea of editing out a severe monogenic disorder like Huntington's disease or Tay-Sachs. These conditions cause profound suffering, have clear genetic determinants, and affect a child who cannot consent. The argument from beneficence is strong.

But what about conditions that are less clearly pathological? Genetic predispositions to obesity, shorter stature, lower IQ? What about editing for traits that are unambiguously enhancements — increased muscle mass, improved memory, resistance to aging?

The treatment-enhancement distinction collapses under scrutiny. Many "diseases" are socially constructed categories. Deafness is considered a disability by the hearing world but a cultural identity by many in the Deaf community. Some forms of dwarfism are well-managed with modern medicine and embraced as part of personal identity.

If we permit editing for sickle cell disease, can we prohibit editing for a genetic predisposition to severe depression? Where does treatment end and enhancement begin? And who decides?

The Equity Problem

Even if we could draw a clean line between treatment and enhancement, access would remain deeply unequal. Germline editing will be expensive. It will require IVF, preimplantation genetic testing, and sophisticated laboratory infrastructure. In a world where 40% of births occur without skilled attendants, germline editing risks becoming a technology of the privileged — widening existing health disparities along socioeconomic and geographic lines.

This isn't hypothetical. The history of reproductive technologies tells us exactly what will happen. IVF, prenatal screening, and preimplantation genetic diagnosis are widely available in wealthy nations and functionally nonexistent in much of the Global South.

"The question isn't just whether germline editing is ethical in the abstract. It's whether it's ethical in a world of radical inequality. A technology that benefits only the wealthy isn't just incomplete — it's unjust." — Dr. Keolu Fox, University of California San Diego

Consent and Future Generations

Perhaps the most fundamental objection to germline editing is the question of consent. Somatic gene therapy affects only the treated individual, who can (in most cases) provide informed consent. Germline editing affects every descendant. A decision made by parents and clinicians in 2026 would propagate through a family line indefinitely.

Proponents argue that we already make countless decisions that shape our children's lives without their consent — from vaccination to nutrition to the neighborhoods we raise them in. The choice to not edit out a devastating genetic disease, when the technology exists, is itself a choice with consequences.

Critics counter that there is a qualitative difference between environmental influences and permanent genetic modifications. We can change schools, diets, and neighborhoods. We cannot undo a germline edit.

This tension has no clean resolution. It requires us to think carefully about the nature of parental responsibility, the limits of reproductive autonomy, and the moral status of future persons.

A Path Forward

I don't believe the germline editing debate has a simple answer. Those who claim it does — whether prohibitionists or enthusiasts — are not grappling with the full complexity.

What I do believe is that we need:

1. Robust international governance — not a moratorium, but a framework with teeth. The WHO's advisory guidelines are a start, but we need binding agreements and enforcement mechanisms.

2. Continued basic research — including on human embryos, within ethical limits. We cannot make informed policy decisions without understanding the biology. The 14-day rule for embryo research should be revisited, as recommended by the International Society for Stem Cell Research.

3. Equity-centered design — any clinical pathway for germline editing must include plans for global access. We should learn from the failures of COVID-19 vaccine distribution.

4. Public engagement — the decision about whether and how to edit the human germline cannot be left to scientists and bioethicists alone. It affects everyone. We need broad, inclusive, informed public deliberation.

5. Epistemic humility — we must acknowledge how much we don't know. The human genome is not a blueprint with discrete, well-understood modules. It is a complex, dynamic system shaped by billions of years of evolution. Every edit has potential downstream effects that we cannot fully predict.

The CRISPR baby debate isn't over. It is, in many ways, just beginning. The technology is advancing faster than our ethical frameworks. The time to build those frameworks is now — not after the next He Jiankui.

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Grace Kim is a bioethics researcher and writer focused on the intersection of emerging biotechnology and social justice. Her work has appeared in the American Journal of Bioethics, The Hastings Center Report, and Nature Biotechnology.

References

• Musunuru, K. (2019). The CRISPR Generation. BookBaby.
• National Academies of Sciences (2020). Heritable Human Genome Editing. The National Academies Press.
• WHO Expert Advisory Committee (2024). Human Genome Editing: Updated Governance Framework.
• Baylis, F. (2019). Altered Inheritance: CRISPR and the Ethics of Human Genome Editing. Harvard University Press.
• Liu, D.R. et al. (2023). "Prime editing: advances and therapeutic applications." Nature Reviews Genetics, 24, 161-177.
• Charo, R.A. & Greely, H.T. (2015). "CRISPR Critters and CRISPR Cracks." The American Journal of Bioethics, 15(12), 11-17.