In late 2018, a Chinese biophysicist named He Jiankui claimed he had genetically edited the embryos of twins before they were implanted in their mothers’ womb. The edit, Jiankui said at the time, would protect the two girls, named Lulu and Nana, from acquiring their father’s HIV infection.
It was a remarkable announcement for two reasons. First, the technique – if it worked – promised a new way to prevent a form of HIV transmission. Second, by performing his experiment, Jiankui had resorted to unethical practices to achieve what he cast as a greater good, drawing criticism not just from scientists around the world but from within China as well.
On December 3, the MIT Technology Review, a news magazine, published snippets from the scientific paper detailing Jiankui’s experiment for the first time, and they suggest Jiankui could have been less rogue do-gooder and more reckless attention-seeker. Specifically, the parts of the paper Tech Review shared suggest Jiankui’s experiment may have actually failed and that Jiankui had to have known this.
Tech Review has said it received copies of the unpublished paper through unnamed sources and has shared them with independent experts for comments. If the paper’s authors had submitted it to a traditional scientific journal – which Jiankui did say at a conference in Hong Kong in November 2018, although he didn’t name the title – it would have sent copies to independent reviewers as part of a process called peer-review.
The snippets confirm Jiankui didn’t adhere to ethical and scientific norms in his experiment, and that he continued with it even after early results indicated his genetic editing could have introduced other unknown, and unintended, mutations in the genes of the embryos.
It appears now that he and his team weren’t able to reproduce the mutation of a gene called CCR5, which provides resistance to HIV-1, the viral strain that causes half of all AIDS infections worldwide. This was Jiankui’s principal claim in November 2018, and the foundation of his proclamation that his experiment would help “control the HIV epidemic”.
The incident was also important for CRISPR, the gene-editing tool invented only seven years ago. Scientists had already known CRISPR wasn’t 100% effective before Jiankui’s announcement. Debojyoti Chakraborty, a scientist at the Institute of Genomics and Integrative Biology, New Delhi, told The Wire in January 2019, “CRISPR has certainly made gene-editing easier but the strategy is not entirely foolproof and may sometimes introduce mistakes at unintended positions” of the gene.
After the announcement, biologists around the world were concerned that his experiment could have induced debilitating or life-threatening conditions in the bodies of the newborn twins. Scientists at the University of California, Los Angeles, even reported in February this year that if Jiankui had indeed managed to edit the CCR5 gene, the change could have affected the twins’ cognitive function.
Moreover, two scientists Tech Review quoted expressed concerns about whether Jiankui’s experiment was necessary at all. Rita Vassena, scientific director of the Eugin Group, pointed out that in Jiankui et al’s rush to find a new defence against the scourge of HIV, they had failed to consider the numerous options that already exist for HIV-positive couples to protect their children from the infection.
Jeanne O’Brien, a reproductive endocrinologist, told Tech Review, “The social context in which the clinical study was carried out is problematic and it targeted a vulnerable patient group. Did the study provide a genetic treatment for a social problem?”
In November 2018, Jiankui, then an associate professor at Southern University of Science and Technology in Shenzhen, publicly presented his work in Hong Kong, where he said he was “proud” of what he’d accomplished. He said he was then conducting a medical trial in which eight couples had agreed to participate before one dropped out; the father in each of these couples was HIV-positive. He had also said there was a second “potential pregnancy” as part of his study.
Reuters subsequently reported in January 2019 that Jiankui “had ‘deliberately evaded oversight’ with the intent of creating a gene-edited baby ‘for the purpose of reproduction’, according to the initial findings of an investigating team set up by the Health Commission of China in southern Guangdong province, Xinhua news agency reported.”
To quote from a report by Sarah Iqbal in The Wire,
Tinkering with genetic material is a sensitive issue because it impinges on one’s identity. At present, there is an international moratorium on the genetic editing of human embryos for reproductive purposes. The practice has even been denounced by China’s medical board; it only permits the editing of human embryos less than 14 days old.
In India, the ethical guidelines of the Indian Council of Medical Research disallow any research related to germline genetic engineering or reproductive cloning. But editing the genomes of adult human cells is permissible subject to approval by an ethics committee.