With Announcement of Gene-Edited Babies, Ethical Questions Abound

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A Chinese researcher claimed this week to have created the world’s first gene-edited babies — twin girls who he says were born earlier this month. The announcement, published on Monday, sent shockwaves through the scientific community, with ethicists calling it “unconscionable” and “highly irresponsible.”

While gene-editing has been conducted in embryos used in lab research since 2015, going so far as to alter DNA before or at conception is banned in the United States and other countries. The regulations in China are murkier, though the country’s vice minister of science and technology, Xu Naping, has stated that the researcher, He Jiankui of the Southern University of Science and Technology in Shenzhen, may face legal action following further investigation. “The genetically edited infant incident reported by media blatantly violated China’s relevant laws and regulations,” Xu told China’s state-owned CCTV on Thursday. “It has also violated the ethical bottom line that the academic community adheres to.”

Indeed, scientists say much more research needs to be done in order to fully understand the potential consequences of passing edited DNA to future generations. They also raise concerns about the potential use of the technology not just to tackle disease, as He claimed to have done, but to seek enhancements or produce so-called “designer babies.”

“This is far too premature,” Dr. Eric Topol, head of the Scripps Research Translational Institute in California, told the Associated Press of the development, which has not yet been independently confirmed. “We’re dealing with the operating instructions of a human being. It’s a big deal.”

As part of a clinical trial, He, an associate professor of bioengineering, recruited couples in which the male partner had HIV and the female partner did not. His aim, however, was not to prevent transmission of the virus to the resultant children, but rather to alter their genes to protect them from the future possibility of infection.

To do this, He said he used the tool Crispr-cas9, an enzyme designed to cut DNA at a specific location, to target the embryo’s CCR5 genes, through which HIV can enter the cells. While He defends his actions by citing the growing problem of HIV in his country, critics counter that there are other ways to prevent HIV transmission and that the disease can be well managed with medication if ultimately contracted.

Puzzlingly, the procedure seems to go against He’s own ethical guidelines, published in The Crispr Journal two days after the births were announced, which state that gene-editing should only be permitted when “the risks of the procedure are outweighed by a serious medical need.” What’s more, it appears that He only disabled one copy of the gene in the twin known as “Nana,” meaning that she may not actually be resistant to HIV after all.

“In that child, there really was almost nothing to be gained in terms of protection against HIV,” Dr. Kiran Musunuru, an expert in gene editing at the University of Pennsylvania, told the Associated Press. “And yet you’re exposing that child to all the unknown safety risks.”

Appearing at the Second International Summit on Human Genome Editing in Hong Kong this week, He announced that a second pregnancy involving his gene-edited embryos is currently underway.

At this point in time, it’s unclear whether the participants in He’s trial fully understood what they were signing up for. His employer, which has launched its own investigation, said He had been on leave since February and that he did not conduct his research at the university.

Separately, Rice University in Texas has said that it is investigating bioengineering professor Michael Deem after he was quoted as claiming to have been involved in the work.

As the genome editing summit concluded in Hong Kong on Thursday, its 14-member organizing committee rejected the idea of a moratorium on gene-editing research, but issued a statement reiterating the consensus that “proceeding with any clinical use of germline editing remains irresponsible at this time.”

Also in the news:

• The Crispr babies raised knotty journalistic questions this week, too, with the Associated Press and the MIT Technology Review squaring off over the scoop. The Tech Review, working off of rumors of He Jiankui’s work in Shenzhen, crossed the finish line first on Sunday, but when the AP followed up just hours later with its definitive report — which included the news that He had indeed produced gene-edited babies — it was clear that the news agency had been privy to the details for some time. That prompted the author of the Tech Review story, Antonio Regalado, to question on Twitter whether the AP had violated journalistic protocol by keeping the ethically-charged news under wraps in the service of He’s interests. Similar questions were raised by Kelly Hills of the bioethics consulting firm Rogue Bioethics: “This isn’t the AP reporting the news as it happens,” Hills wrote on Twitter. “They’re creating the news, in conjunction with the scientists involved. It seems to turn the AP into a PR machine, rather than a news organization.” Lauren Easton, director of media relations for the AP, disputed that characterization in an email message to Undark, noting that it had always planned to publish its story after He had presented his research for review, either in a journal article or at a scientific meeting. Once it was clear that the story was breaking ahead of such vetting, she said, AP published. “To be clear,” Easton said, “AP never had any agreement with He Jiankui that we would publish any story about his research.” Other defenders pointed out that agreeing to hold-off on the publication of scientific findings until researchers are ready to publish their work — called a news embargo — is commonplace in journalism. Still, Regalado’s response to that argument was withering: “I’m lucky,” he wrote on Twitter, “that he didn’t tell me there was a baby under embargo.” (QuartzTwitter)

• The latest Ebola outbreak in the Democratic Republic of the Congo is now the second-largest in recorded history. The country has just taken a step to improve treatment by launching its first multi-drug clinical trial to determine which of the four leading Ebola treatment drugs is the most effective. Due to the urgent need to treat the disease, the World Health Organization (WHO) previously allowed medical researchers to use the four drugs even though they had not yet gone through enough clinical trials. Since the beginning of the outbreak about four months ago, the WHO has estimated that 426 people have been infected in the DRC, and 242 have died. This number is much smaller than the outbreak in 2014 in West Africa that killed more than 11,300 people, but Ebola’s virulence and fatality rate makes it particularly hazardous. “Our country is struck with Ebola outbreaks too often, which also means we have unique expertise in combating it,” said Oly Ilunga, the DRC’s health minister. “These trials will contribute to building that knowledge, while we continue to respond on every front to bring the current outbreak to an end.” (NPR, HuffPost)

• Two scientists will receive the MIT Media Lab’s 2018 “Disobedience Award” for their role in the #MeToo movement. BethAnn McLaughlin, a neuroscientist at Vanderbilt University, and Sherry Marts, a consultant advising academic and nonprofit organizations on addressing sexual harassment, will split the $250,000 prize with Tarana Burke, a civil rights activist who initiated the “MeToo” movement in 2006. McLaughlin is being recognized for calling out known and alleged harassers on Twitter under the hashtag #MeTooSTEM, and for petitioning prestigious science organizations, including the National Academies of Sciences, Engineering, and Medicine (NASEM) and the American Association for the Advancement of Science (AAAS), to deny proven harassers lifetime memberships and fellowships. She also succeeded in convincing the website RateMyProfessors.com to remove its “hotness” category. Marts, who stopped pursuing her Ph.D. in cell and molecular biology at Duke University due to sexual harassment, is honored for her efforts to make academic and nonprofit organizations more inclusive and responsive to allegations of sexual and scientific misconduct. (Science)

• Amazon, the once-quaint online bookstore turned multibillion-dollar empire, announced Tuesday that it’s venturing into the messy world of electronic health records. With Amazon Comprehend Medical, a “HIPAA-eligible machine learning service,” the company promises to improve patient care and outcomes, and cut costs, by mining digital records and clinical notes and extracting key data points — medications, medical conditions, and treatments and procedures, among others. “We’re able to completely, automatically look inside medical language and identify patient details,” Matt Wood, general manager of artificial intelligence at Amazon Web Services, told The Wall Street Journal, “with incredibly high accuracy.” The move is the company’s latest foray into the health care industry, which is estimated to be worth $3.2 trillion. In June, it acquired the online pharmacy startup PillPack, and earlier in the year announced a joint initiative, with JPMorgan and Berkshire Hathaway, to overhaul health care for its U.S. employees. (Wall Street Journal)

• After a journey of more than 300 million miles, NASA’s InSight Lander safely touched down this week in Elysium Planitia, a sand-filled crater near the Martian equator. The landing was live-streamed to viewing parties across the U.S. and Europe, including in New York’s Times Square. InSight joins NASA’s Curiosity and Opportunity rovers as the only currently operating missions on the Martian surface, though Opportunity has been quiet since a dust storm last summer. Over the next two years, Insight will deploy seismometers, a heat probe, and other instruments to listen for tremors — or marsquakes — and gather information about the Red Planet’s interior. Scientists hope that information can help answer longstanding questions about the thickness of the Martian crust, the size of its molten core, and other previously unmeasurable properties of the planet. Before the $1 billion spacecraft sets out answering those questions, however, it is doing what any interplanetary traveler would after a long, six-month journey to an exotic destination: It’s taking selfies, catching rays, and recharging its batteries. (The New York Times)

• And finally: Multi-drug-resistant bacteria are now turning up in the International Space Station (ISS), according to a recent study. Researchers, led by Nitin Singh of NASA’s Jet Propulsion Laboratory, analyzed samples taken from both toilets and exercise equipment in the facility, which orbits about 220 miles above earth. The new findings confirmed previous work which also found evidence of drug-resistant bacteria in the ISS latest investigation, but sought to determine how dangerous the microorganisms are to the station’s human occupants. The analysis showed that the space-based bacteria were related to a strain of Enterobacter linked to illnesses in some hospitals — but are not at this point as virulent. The scientists recommended continued monitoring, however, given that the microorganisms are likely to adapt and evolve in this new microgravity environment. (Motherboard)

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