Strangely, the story has aged. When He Jiankui announced he had altered the twin girls’ genomes on that Hong Kong stage in late 2018, the audience responded as they do when something irreversible has just occurred. First, be quiet. Then it was loud. Then loudly. After seven years, the questions remain, but the noise has subsided. They’ve actually gotten heavier.
The twins’ pseudonyms, Lulu and Nana, are now school-age children in China. The one thing almost everyone agrees was done correctly is that their identities are still protected. Almost nothing is settled beyond that. He said that in order to provide the girls with lifelong protection, he had disabled CCR5, the gene that HIV uses to enter immune cells. When scientists later examined the slide he presented, the actual edits appeared more disorganized than that. One twin seemed to have only one mutated copy of the gene, meaning that she would not be truly protected against HIV. The other might be a genetic mosaic, indicating that not every cell was affected by the edit. It’s the kind of information that is overlooked in favor of more prominent headlines, but it is important. The cuts weren’t clean.
| Profile: He Jiankui & The CRISPR Babies Case | Details |
|---|---|
| Full Name | He Jiankui |
| Profession | Biophysicist, former associate professor |
| Former Institution | Southern University of Science and Technology, Shenzhen |
| Announcement Date | November 2018, Second International Summit on Human Genome Editing, Hong Kong |
| Children Involved | Twin girls known as Lulu and Nana; a third child reportedly born later |
| Gene Targeted | CCR5 — a receptor used by HIV to enter immune cells |
| Editing Tool Used | CRISPR/Cas9 |
| Legal Outcome | Sentenced to 3 years in prison in December 2019 for “illegal medical practice” |
| Released From Prison | April 2022 |
| Current Status | Returned to public life, conducting research on rare genetic diseases |
| Major Source of Coverage | Nature journal investigations and follow-ups |
Reading the scientific commentary from scientists like Philip Murphy at the NIH and Rasmus Nielsen at Berkeley gives the impression that the field is still figuring out what was really done. Murphy has noted that an altered CCR5 protein may act in ways that are unpredictable, which is a polite way of saying that the children may have unidentified consequences. Unintentional cuts that CRISPR occasionally makes elsewhere in the genome are known as off-target edits, and they continue to be a concern. There weren’t, he insisted. At the time, some scientists weren’t persuaded. They also aren’t right now.
What transpired with him is a unique arc in and of itself. He was found guilty in 2019, freed in 2022, and by 2023, he was back on social media, hosting press conferences, revealing new findings, and even remarrying in an article that read more like a tabloid than a scientific update. He has never quite apologized, but he has conveyed something akin to regret. From a distance, it’s difficult to ignore how completely the scientific establishment moved on without him as he continued to attempt to reenter the room.
Even though no one likes to acknowledge it, his actions have changed the field as a whole. In the majority of nations, including China, where the regulations were in place prior to his disregard, germline editing is still prohibited for reproductive purposes. The 2016 language has been tightened by the International Society for Stem Cell Research. Governance frameworks, which felt theoretical prior to 2018, are now discussed for hours at conferences.
There’s also the more subdued tale. Three kids, maturing, attending school, just being kids. According to reports, their parents kept them hidden from the public, which seems like the only reasonable course of action in an unjustifiable circumstance. Nobody can truly predict how the changes will impact their health in ten or thirty years. Immune system performance, cognitive effects, and cancer risk are all hypothesized but unproven. They cannot yet be explained by the science that produced them.
In ten years, we might learn more. It’s also possible that we won’t because it’s more difficult than it seems to ethically and practically track three children through a lifetime. There is no doubt that a boundary was crossed before anyone could agree on its exact location. That’s the part that stays.
