CRISPR Babies – One Year Later

Even if you’re not familiar with the gene-editing technology CRISPR Cas-9, you’ve probably heard the term designer babies. Until about a year ago, this label had only been used to refer to theoretical future children whose genomes were intentionally manipulated by scientists.

But on November 25, 2018, that changed. The shocking news was accompanied by a four-minute video on YouTube starring Dr. He Jiankui, a biophysics researcher based in Shenzhen, China. Wearing a crisp blue shirt and smiling broadly, He announced the recent births of twin girls named Lulu and Nana who, he claimed, “came crying into the world as healthy as any other babies.” Lulu and Nana, he explained gleefully, had developed from embryos with DNA he had altered in an attempt to make them resistant to HIV.

Two days later, Dr. He attended the Second International Summit on Human Genome Editing, where he announced the births in person to colleagues and the media, apparently expecting accolades.

That’s not what happened. Instead, He’s actions were widely and loudly condemned.

Altering the genes of eggs, sperm, or embryos and using them to start a pregnancy—known as heritable genome editing or germline modification—changes every cell in the resulting child; that child would then pass the altered DNA down to their children and to all future generations.

Heritable genome editing is illegal in at least 50 countries and, for decades, has been considered a bright line that researchers should not cross. This widespread agreement reflects many good reasons to forego heritable genome editing: It’s not safe, and we may never be able to confidently say that it is. It’s not needed; somatic gene therapies can treat a variety of conditions without altering the DNA of future generations, and people can avoid passing on genetic diseases by using existing embryo screening techniques. Most troubling of all, this technology has the potential to undermine a fair and inclusive society, further advantaging people with wealth and privilege over people without.

Given the degree of outrage expressed about Dr. He’s wildly reckless human experimentation, one might assume that, over the past year, we would have seen decisive action: moves toward a global ban on heritable human genome editing, or at least an enforceable moratorium that would provide an opportunity for public deliberation. We might have expected that it would be a top issue for politicians, and that any scientist pursuing experiments like He Jiankui’s would be shunned or sanctioned.

But that is also not what happened.

Things don’t look much different than they did a year ago. There has been little action among elected officials in countries that don’t already have prohibitions on their books. Worse, a scientist in Russia, Denis Rebrikov, has announced his intention to go forward with heritable genome editing experiments. And an elite, self-selected commission dominated by scientists has tasked themselves with figuring out a path toward heritable genome editing without bothering to consult the public about whether this is something we ought to pursue at all.

This resistance to prohibition is particularly surprising given the ever-growing list of prominent scientists (including CRISPR pioneers), scholars, public interest advocates, and biotech companies declaring that we should not be altering the genomes of future generations. Top scientists from institutions including the National Institutes of Health and the Broad Institute of MIT and Harvard, have publicly called for a moratorium—in some cases, repeatedly.

There are signs that our political representatives are finally paying attention and speaking up about this potentially world-changing issue. The US Senate may soon vote on a resolution on human genome editing. The resolution’s bipartisan co-authors, Senators Dianne Feinstein (D-CA), Marco Rubio (R-FL), and Jack Reed (D-RI), rightly acknowledge that the “question of whether to proceed with heritable human gene editing touches on all of humanity.”

It's progress, but it’s not enough. We are at a tipping point with heritable genome editing, not unlike where we were with climate change a couple of decades ago. We have the foresight and the time to avoid dire consequences; we can still act to ensure the equitable human future we owe to our children and generations ahead. But if we are to counteract the small but vocal group of techno-enthusiasts determined to pursue heritable genome editing, we need to take decisive action—and do it now.