In today’s Finshots, we trace the record-speed rescue of an infant using CRISPR gene editing and weigh the growing calls to freeze the very science that pulled it off.

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The Story

Six months ago, an infant known publicly only as KJ was staring at becoming a brutal statistic. This child had a CPS1 deficiency. It is a rare genetic disorder that prevents the liver from removing excess ammonia from the body, the build up of which could become toxic, especially the brain. About half the babies born with CPS1 deficiency pass away within weeks. And KJ seemed to be headed in that direction.

But last week, KJ made medical history by becoming the world’s first infant to be treated for this condition using a personalised gene-editing therapy. That alone is a medical breakthrough. But the real marvel lies in the speed of execution. Drug development normally takes years. And KJ didn’t have that luxury. So, doctors wanted to see if they could make custom therapy using gene editing just for KJ, that too in record time. 

And it worked.

You see, gene editing works by tweaking the DNA inside our cells. And one of the best ways to do this is using something called CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats) technology. 

CRISPR works like a pair of molecular scissors that is guided by a GPS-like system, where scientists program a short RNA sequence that matches the faulty section in your DNA. This helps CRISPR find the exact spot in the genome or your genetic code. And once there, it can snip the DNA and either remove, fix, or even insert new genetic material.

However, not everyone is thrilled about gene editing. 

But why? After all, CRISPR is the same kind of tool that’s been used to treat certain cancers. And now, rare genetic disorders like KJ’s. So what’s the problem?

To understand that, we need to go back to 2018, when Chinese scientists announced the birth of the world’s first CRISPR-edited babies — twin girls whose genes had been altered to make them resistant to HIV. Contrary to what they expected, the backlash was immediate and fierce.

Scientists across the globe condemned the move, and the WHO (World Health Organization) called for a global moratorium on germline editing or heritable genome editing (the kind that affects not just one person, but their future children too). Many researchers even began to question whether we are opening a door that couldn’t be closed.

But their concern wasn’t entirely the scientific consequences. Rather, the societal consequences. If gene editing could be used to edit out disease, what’s stopping someone from using it to engineer height, intelligence, or other “desirable” traits? And if only the wealthy could afford such enhancements, it could widen the inequality gap in ways we’re barely beginning to understand.

On top of that, there’s a regulatory vacuum. Different countries have wildly different rules around this technology. So, people could just fly to where there are lax regulations, get the edit, and return to their home country to give birth. This is why countries such as Germany, Australia, South Korea, etc. have banned germline editing altogether, while some other countries have yet to take a stance. And without a global consensus, there's fear that countries with looser laws could become testing grounds for ethically questionable experiments.

But you see, there’s an important distinction here, one that KJ’s case highlights. 

It’s where we need to draw the line between ‘germline editing’ and ‘somatic editing’.

Germline editing alters the DNA of embryos or reproductive cells. That means the changes don’t just affect one person. They’re passed down to all future generations. If something goes wrong, there’s no easy way to undo it. And that’s the kind of editing the scientific community is wary of, because a single mistake could ripple through the gene pool indefinitely.

But base editing, the kind used on KJ, is different. It’s a form of somatic gene editing, meaning it only targets cells in a specific organ or tissue. So it edits the DNA in a specific part of the body, like the liver. And these changes don’t get passed on. They fix the mutation in only that person, and that’s exactly why it’s gaining momentum as a safe and powerful tool to treat diseases — not just CPS1 deficiency, but even certain types of cancers.

This is because cancer, in its most basic form, is just a mutation in DNA. If you figure out how to modify this DNA, you get rid of the cancer. Ever since scientists figured this out, they have been trying to come up with a solution. And CRISPR seems to be the most promising one so far.

Take, for instance, T-cell engineering. Our immune system uses T-cells to detect and destroy threats, including cancer cells. But cancer is crafty. It learns how to evade these immune patrols by sending out signals that turn T-cells off.

So scientists thought, what if we could genetically rewire the T-cells?

So using CRISPR, researchers began extracting T-cells from cancer patients, editing out the genes that dampen their cancer-killing abilities (like PD-1), and then re-injecting them back into the body to fight cancer more aggressively. In some trials, this method has shown remarkable results, especially in blood cancers like leukemia and lymphoma.

It doesn’t stop there. CRISPR has been used to knock out genes that make tumors resistant to chemotherapy. It’s been used to insert genes that help immune cells find and stick to cancer cells. And in some experimental setups, it’s even been used to correct single-letter mutations in cancer cells — errors in the DNA that started the cancer in the first place.

However, these developments are still early-stage, and mostly limited to blood cancers. But the potential is enormous. Especially with newer, more precise forms of CRISPR, like base editing, which can make pinpoint changes without cutting the DNA. 

But of course, science moves faster than policy. And while the technology is accelerating, regulation is struggling to keep pace.

That’s why scientists, ethicists, and policymakers have been pushing for a global framework that separates what’s possible from what’s permissible. 

The World Health Organization has called for greater oversight. International science academies have issued joint statements urging caution. Still, without binding global rules, the risks remain.

One route forward is differentiated regulation. Treat germline edits the way aviation treats supersonic passenger flights. Ban them until technology and governance can prove airtight, then relax the regulations. Similarly, governments can fast-track somatic trials for lethal diseases under a compassionate use framework (which allows experimental treatments for patients with no other options), but bake in guardrails such as long-term registries that track patients or a public data ledger so that labs learn collectively rather than in solitude. 

But that’s easier said than done.

So, yes, what happened with KJ is remarkable. It’s proof that CRISPR can be harnessed to save lives. 

But it also raises important questions about how we use that power. Who gets to decide what traits are worth editing? Who gets access to the cure? And how do we ensure that in trying to fix the code of life, we don’t lose sight of the values that make life worth protecting?

One thing, though, is for sure: If the next time CRISPR makes headlines, it’s because someone walks out of an oncology ward cancer-free. And when that happens, some of today’s moral knots may just start to untangle themselves.

Until then...

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