Governments need to pay more attention to controlling CRISPR, the revolutionary gene-editing tool, says one of its co-creators....
One year on: Jennifer Doudna, a University of California biochemist who helped create CRISPR in 2012, wrote an editorial in Science yesterday titled “CRISPR’s unwanted anniversary.”
The anniversary is that of the announcement by Chinese scientist, He Jiankui, that he had created gene-edited twin girls. That was a medical felony as far as Doudna is concerned, an unnecessary experiment that violated the doctor’s rule to avoid causing harm and ignored calls not to proceed.
A moratorium? Forget about it: So how do we stop this happening again? Since the “CRISPR babies” debacle, scientists have talked about self-regulation. One idea was a moratorium: a ban of a few years before anyone tries using the technology on the human germline again. (The germline refers to embryos, sperm, and eggs—anything that, if you edit it, the changes will pass down through the generations.) But that's not going to cut it, says Doudna.
“I believe that moratoria are no longer strong enough countermeasures,” she writes, adding that there are “moments in the history of every disruptive technology that can make or break its public perception and acceptance.”
Tinkering and temptation: CRISPR has uncounted uses—in research, altering plants, and making novel human medicines. The toolbox will only get better, Doudna says, and “will soon make it possible to introduce virtually any change to any genome with precision." This revolutionary step can “improve the well-being of millions of people.”
But the same advances mean that “the temptation to tinker with the human germ line” is not going to go away, Doudna says. That language—tinkering and temptation—makes it clear she thinks designer babies are a Pandora’s box we might not want to open.
Doudna specifically calls out Russia, since a scientist there is bidding to use the technology again to make babies.
Rogue concern: In her editorial, Doudna never clearly says exactly why she is so worried about “CRISPR babies.” But at least part of the answer is the China case showed how gene-editing gives great power to small teams of scientists—and how finger wagging might not be enough to stop them from doing wrong.
In her own laboratory, Doudna has been dedicating time towards developing antidotes and countermeasures to CRISPR, in case it’s used in even more frightening ways, like as a weapon.
Time to regulate: The test ahead is how society will use CRISPR and, according to Doudna, “stakeholders must engage in thoughtfully crafting regulations of the technology without stifling it.”
That sure doesn’t sound like strong medicine. But don’t underestimate what it means when one of the heroes of the CRISPR story suggests that regulators (that is, governments) “engage, lead, and act.”
For example, after Doudna wrote in Foreign Policy that gene-editing was racing ahead without regulation, legislators in California passed the first ever law to regulate CRISPR, targeting biohackers.
Conflict of interest: Doudna helped invent CRISPR and she’s one of its biggest beneficiaries too. A disclosure at the end of her item lists five companies she started and another five on whose boards she sits, including drug giant Johnson & Johnson, all of which has made her a gene-editing multi-multi-millionaire.
So if she’s telling you she needs help control what she created, believe her.
Breakthrough-to-Impact
The next wave of digital transformation is here. Demand for seamless end user experiences and the need to build new business models coupled with the rise of exponential technologies such as cloud, AI, 5G, blockchain and quantum, amongst others, is reshaping business platforms and architectures.
Apple’s new standalone app, called Research, is an effort to collect information on three common aspects of people’s health. ...
We’re gonna science this: As the name suggests, the app is meant to collect user data and send it to research partnerships that Apple has set up—three of them, each of which will focus on a separate issue. The first, on women’s health, links the company with Harvard’s public health school and the National Institutes of Health. The second study focuses on noise pollution and headphone usage, sharing data with the University of Michigan and the World Health Organization. The last is on heart and movement, with researchers from Brigham and Women’s Hospital and the American Heart Association.
How does it work? If you have an Apple Watch and are interested, all you have to do is download the Research app on your iPhone and give it permission to link, collect, and share data. Apple is hoping the results of its first big push to collect health information—tracking when heart rates go too high or low—convinced users that the company is up for the job. What do users get for giving up access to all that precious data? Apple says they can earn the reward of a pat on the back and “Humanity [saying] thank you.”
Apple is quietly covering up some health tech missteps. Back in September, Apple announced that iOS 13 would include a revamped Health app, which consolidated information from various other health apps—food data, meditation minutes, and steps, for example—into one place. That update also made it possible for the first time to track menstrual cycles, a response to criticism that previous versions neglected one of the chief health concerns shared by half of all humanity. That the project is homing in on headphone usage is also pertinent, since Apple’s ubiquitous earbuds have been blamed for damaging people’s hearing.
What about privacy? Apple claims the Research app will share data only with the studies a participant has explicitly signed up for. The company is also touting the reliability of its data—an Apple-sponsored study was published ahead of the app announcement in the New England Journal of Medicine, which suggests the watch is collecting trustworthy data that won’t mistakenly warn users of an irregular pulse, for example.
Tech companies are going hard after health data. Google just bought Fitbit, and earlier this week reports emerged that it is partnering with the nonprofit health giant Ascension to collect patient data. Apple has long taken a different route, going directly to users and marketing its products as self-tracking health aids. And while collecting data for the universal good sounds nice, one researcher told the New York Times, “This is the big question. Is this ‘so what’? Or are we going to learn something meaningful we don’t know yet?”
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