CRISPR Babies: Where Are They Now?

-The birth of the first gene-edited children marked a turning point in science, a moment where the promise of curing disease collided with the fear of re-designing humanity.

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The Day Science Shook the World

In November 2018, at a conference in Hong Kong, Chinese scientist He Jiankui stepped onto the stage and made a shocking claim: he had edited the DNA of human embryos, and two baby girls, later nicknamed Lulu and Nana, had been born.

-He Jiankui defending his work at the conference in Hong Kong

This was not an ordinary scientific announcement. These were the first genetically modified humans. He had used a revolutionary gene-editing tool called CRISPR-Cas9, usually called as “molecular scissors,” to cut and alter DNA. His target was the CCR5 gene, which, when disabled, could provide resistance against HIV.

The news spread rapidly. Some called it a medical breakthrough. Most called it reckless.

-Action of CRISPR technology at the genomic level

The Fallout

The global scientific community responded with outrage. Leading researchers called the experiment as premature, unsafe, and deeply unethical.

Editing the human germline (genes that can be passed to future generations) had been debated in theory, but never attempted in practice. He Jiankui had crossed a boundary without any supervision, safeguards or transparency.

Within months, the Chinese government investigated. He was found guilty of conducting illegal medical practices and sentenced to three years in prison. His work was banned, and he disappeared from public view.

But the children, Lulu, Nana, and a third CRISPR-edited baby quietly reported later, remained.

Where Are They Now?

That’s the question no one has been able to fully answer.

The identities of the CRISPR babies are kept secret to protect their privacy. No confirmed photos, no public records, and no interviews exist. What little is known suggests they are alive and under medical monitoring in China.

Scientists have shown concern that the edits may have unwanted side effects. CRISPR is powerful, but not always accurate. Sometimes it can introduce unexpected mutations that could lead to unknown health risks.

For now, these children live in anonymity. But as they grow older, they will eventually learn the truth: they were the first of their kind.

-Born in secrecy with rewritten DNA, Lulu and Nana are living symbols of humanity’s first step into engineered life.

The Ethics of Editing Humanity

The CRISPR baby experiment forced the world to confront an uncomfortable question: should we edit human genes at the embryonic stage?

• Somatic editing (in adults) treats diseases without passing changes to future generations. This is where most CRISPR research is focused today, with successes in treating sickle cell disease and certain forms of blindness.

• Germline editing, however, alters DNA in a way that can be inherited permanently changing the human gene pool.

The potential upside is enormous: preventing devastating genetic diseases before birth. But the risks are equally huge: unknown mutations, inequality, and the possibility of creating so-called “designer babies.”

For some parents, the idea of ensuring a child free of genetic illness is deeply appealing — and in certain circles, the conversation has even extended to enhancing traits like intelligence, height, or physical performance. What was once a science-fiction topic is slowly entering into real parental considerations, raising the debate even higher.

Who decides where to draw the line?

-Treatment of sickle cell anemia through CRISPR

The Future of CRISPR

Since the scandal, international committees have tightened rules on gene editing. Many countries now ban or heavily regulate such work. For now, the idea is clear, CRISPR is best used to treat patients who already exist, not to create genetically altered children.

But the technology continues to advance. In 2020, Emmanuelle Charpentier and Jennifer Doudna, pioneers of CRISPR, won the Nobel Prize in Chemistry. Clinical trials are underway for CRISPR-based therapies targeting sickle cell anemia, heart disease, and even high cholesterol.

As for germline editing, the debate isn’t over. Some argue it will eventually return, not for designer traits, but to eliminate genetic disorders entirely.

Conclusion

The CRISPR babies remain hidden — symbols of both human ambition and human recklessness. Their existence is a reminder that science doesn’t just push boundaries; sometimes it leaps over them.

Somewhere in China, three children are growing up with a secret in their DNA. Whether they are remembered as medical miracles or as cautionary tales will depend not just on their lives, but on the choices humanity makes about our genetic future.

References

1. Unnatural Selection. (2019). [Netflix Documentary series].

2. Cyranoski, D. (2019). The CRISPR-baby scandal: What’s next for human gene-editing. Nature, 566(7745), 440–442. https://doi.org/10.1038/d41586-019-00673-1

3. Greely, H. T. (2019). CRISPR’d babies: Human germline genome editing in the “He Jiankui affair.” Journal of Law and the Biosciences, 6(1), 111–183. https://doi.org/10.1093/jlb/lsz010

4. Lanphier, E., Urnov, F., Haecker, S. E., Werner, M., & Smolenski, J. (2015). Don’t edit the human germ line. Nature, 519(7544), 410–411. https://doi.org/10.1038/519410a