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MEET THE CHINESE RESEARCHER BEHIND THE 'WORLD'S FIRST DESIGNER BABIES'

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MEET THE CHINESE RESEARCHER BEHIND THE 'WORLD'S FIRST DESIGNER BABIES'

By Carly Stern

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WHY YOU SHOULD CARE

Scientists fear that editing human embryos could lead to a slippery slope to
eugenics.

By Carly Stern

November 28, 2018

OZY Newsmakers: Deep dives on the names you need to know.

In the 2005 novel Never Let Me Go, Ruth, Tommy and Kathy are watched closely by
“guardians” at their boarding school, Hailsham, in the countryside of England.
Hailsham is a decidedly … eerie place. Throughout the book, readers get a sense
that the characters and the world they inhabit aren’t quite real. One day, a
guardian reveals to the students that they’re clones, created for organ
donations. After their donations, the children’s fate is sealed: They will die.

Genetic editing, the subject of Kazuo Ishiguro’s 2005 dystopian tale, has seized
the imagination — and fear — of humans for decades. Why is the idea both
captivating and terrifying? Perhaps because this science always seems like it’s
on the brink of being possible, but slightly out of reach.

This week, it became a little more real as Chinese researcher He Jiankui claimed
he used the gene-editing tool CRISPR to make the world’s first genetically
edited babies. He says he altered the embryos of seven couples (the males had
HIV) during in vitro fertilization (IVF). This led to one pregnancy and the
birth of twin girls with pseudonyms Lulu and Nana.

> Gene surgery is another IVF advancement and is only meant to help a small
> number of families.
> 
> He Jiankui

He wasn’t trying to cure an existing disease, but rather remove the pathway
through which HIV enters by instructing CRISPR-Cas9 to disable a gene
called CCR5. His goal? Babies with HIV resistance, a trait that fewer than 1
percent of people are estimated to have.

He, 34 and a father of two girls, studied at Stanford University and Rice
University before returning to China, where he runs two genetics companies and a
lab at Southern University of Science and Technology (SUSTech) in Shenzhen. His
recent work broke from scientific protocol and ethical norms, both in method and
delivery. The research wasn’t published in a peer-reviewed journal, so his
claims that the editing was successful (and that no other genes were harmed)
remain unverified. Unconventionally, he made the announcement at an
international gene editing conference and in interviews with the Associated
Press. Expanding on his motivations in a YouTube video, He spoke about
discrimination that HIV-positive people still face in China and many developing
countries. “Gene surgery is and should remain a technology for healing,” He says
in the video, in English with lab equipment arrayed behind him. “I understand
that my work will be controversial, but I believe families need this technology,
and I’m willing to take the criticism for them.”



This move has triggered a flurry of backlash and concern in the scientific
community. Using CRISPR to modify sperm, eggs or embryos is banned in the U.S.
(besides in lab research), but it’s permitted in China. With this technology
comes the risk of altering other genes that weren’t meant to be modified. When
CRISPR is used to treat deadly diseases in adults, those changes are confined to
the individual. But when it comes to embryos, those changes can be inherited by
future generations. Even if the process goes smoothly, people with deficiencies
in CCR5 are more susceptible to conditions like West Nile Virus and Japanese
encephalitis. Some scientists also say He’s editing wasn’t complete. “Modifying
human embryos at this stage in our understanding of biology is clearly
unethical,” says Christopher Anderson, a bioengineering professor at UC
Berkeley. “We do not yet understand the full biological consequences of these
actions even in small animals.”

Critics such as Sandip Patel of the University of California at San Diego were
legion on social media.







Meanwhile, Harvard University geneticist George Church called HIV “a major and
growing public health threat,” telling the Associated Press of He’s gene
editing: “I think this is justifiable.”

He took leave from teaching this year but is still on SUSTech’s faculty and runs
a lab there. The university says it wasn’t aware of He’s research and is
investigating him. He also only provided notice of this research in a Chinese
registry of clinical trials in early November. What’s more, the team’s
informed-consent document frames the work as an “AIDS vaccine development
project” and uses technical language, raising the question of whether
participants fully understood what they were consenting to.

 

Many fear that editing human embryos will create a slippery slope to
eugenics. If society treats gene editing like vaccinations, then could all
embryos be edited to prevent as many diseases as possible? Is susceptibility, in
itself, a disease? And at what point does this logic stop? “It risks creating a
new, genetically modified elite … who can’t get sick but passes it on to other
people,” Eben Kirksey, an associate professor of anthropology at Deakin
University, told The Guardian.

Still, there are substantial benefits to human health at stake. CRISPR could
slow the aging process and help humans avoid conditions like obesity and
Alzheimer’s disease. And while the concept of editing embryos is ruffling
feathers right now, societal norms around fertility are always changing. IVF was
considered controversial when it first emerged in 1978. The birth of the first
“test tube baby,” Louise Joy Brown, attracted controversy, but an estimated 8
million babies have been born from IVF and other advanced fertility treatments
since then. “Gene surgery is another IVF advancement and is only meant to help a
small number of families,” He says in the video.

Most troubling to his many critics is how He breached globally accepted
scientific safeguards. “I had hoped that the research community at large would
adhere to the informal moratorium on embryo editing for purposes of reproduction
and am deeply disappointed to see a scientist claiming to have forged ahead
nonetheless,” Rachel Haurwitz, CEO of Caribou Biosciences said in a statement.

He shattered those norms in pursuit of what he sees as a righteous cause. Forty
years from now, will he be seen as a pioneer or pariah? 

Read more about the use of CRISPR to modify crops and new drugs to halt
age-related diseases on OZY.

 * Carly Stern, Reporter Contact Carly Stern


November 28, 2018

TOPICS

 * ASIA
 * China
 * Genetics
 * SCIENCE



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