Make People Better – an imperfect job

The tale of the experiment behind the birth of the first gene-edited humans has historical significance but continues to resemble an incomplete puzzle. I had hoped to find a few more hints and answers about the He Jiankui affair in the 2022 docufilm “Make people better” directed by Cody Sheehy, but now that I finally got to see it I must confess to a bit of disappointment. The impression is of being faced with a bricolage job executed with several valuable elements (never-before-seen footage and audio recordings) and too many random materials. It must be said that the task was difficult, for at least two reasons.

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Chronicles from the London editing summit

CRISPR patient Victoria Gray talking at the summit (credit The Royal Society)

The third – and perhaps final – act of the Human Genome Editing Initiative ended last week. The first summit (Washington 2015) was held amid enthusiasm for the invention of CRISPR, with the aim of fostering a constructive dialogue between science and society. The second edition (Hong Kong 2018) was dominated by the birth in China of the first edited human beings. The main points in the agenda of geneticists and bioethicists meeting a few days ago (London 2023) was to overcome the shock and focus on the next challenges: broadening the range of treatable diseases, reducing the costs of therapies, simplifying them so they can be administered anywhere in the world, and reach as many sick people as possible.

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CRISPR-babies creator is out of prison. What’s next?

And so He Jiankui has been set free after three years in a Chinese prison. What will become of him? Antonio Regalado from MIT Technology Review is the journalist who made the CRISPR-baby scandal explode in 1998 and is probably the best-informed source right now. Regalado writes that “it’s unclear whether He has plans to return to scientific research in China or another country,” but expects that “he’ll find a place in China’s entrepreneurial biotech scene”. Maybe in a low-profile niche as cloner Woo-Suk Hwang did after falling into disgrace several years ago in South Korea?

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CRISPR children, how are they?

Credit: Stefano Navarrini, Innovative Genomics Institute, Anna Meldolesi

Lulu and Nana are three years old. Amy is the name Nature Biotechnology uses to refer to the third CRISPR baby, born in late spring-early summer 2019. Their health is a closely held secret, that Vivien Marx has investigated for the journal’s December issue. “A full understanding of the health risks faced by the children due to their edited genomes may lie beyond the reach of current technology”, she writes. Despite or maybe because of that, the news feature is well worth reading. Below are a few points:

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WHO’s roadmap on genome editing

A multi-disciplinary panel of 18 experts from all over the world, a two years long consultation, over 150 pages. The much-awaited report of the World Health Organization on human genome editing was delivered on July 12 and is divided into three parts: A framework for governance, Recommendations, and Position Paper. While not legally binding, it is expected to influence both governments and the scientific community, by offering a roadmap based on widely shared ethical principles and usable policy tools.

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Heritable Editing: Yes or No?

According to the survey conducted by Pew Research Center in 20 countries, people are positive about gene-editing if used to treat illnesses a baby would have at birth (support is particularly strong in Spain). People are also generally in favor of using human gene editing to reduce the risk of future health problems, but less so. India is the only country where the majority says the possibility of using human gene editing to make a baby more intelligent is also acceptable. See more data here.

Italy is a yellow spot in the heritable editing map. Why?

Look at this map, from a detailed and up-to-date analysis published in the CRISPR Journal. It’s the global policy landscape on heritable human editing, i.e., modified embryos transferred to a uterus to initiate a pregnancy. Who would expect a catholic country like Italy to stand out as one of the very few countries not totally prohibiting such a controversial practice?

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About chromosomal mayhem in edited embryos

Luigi Naldini, SR-Tiget

CRISPeR Frenzy asked Luigi Naldini of the San Raffaele Telethon Institute for Gene Therapy in Milan for comment on three studies published in June on the preprint server bioRxiv. The experiments were carried out independently by the groups of Kathy Niakan of the Francis Crick Institute in London, Dieter Egli of Columbia University in New York City, and Shoukhrat Mitalipov of Oregon Health & Science University in Portland. These findings heighten safety concerns about heritable genome editing (see the news item by Heidi Ledford in Nature). Below you can read Naldini’s thoughts.

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CRISPR-baby sentence, too little info to comment?

The year 2019 ended with three years in jail sentenced to He Jiankui for illegal medical practice. The CRISPR-baby scandal’s epilogue was applauded on twitter by a few leading scientists such as Craig Venter and Fyodor Urnov and decried on STAT News by the controversial biohacker Josiah Zayner. Most experts, however, stayed silent.

As stressed by the Washington Post, “the judicial proceedings were not public, and outside experts said it is hard to know what to make of the punishment without the release of the full investigative report or extensive knowledge of Chinese law and the conditions under which He will be incarcerated.”

The CRISPR-babies scandal a year later – Q&A

Exactly one year ago, AP News went public with the CRISPR-babies story. What happened to He Jiankui then? His trace was lost after the picture of him sequestered in a university guesthouse in Shenzhen. 

How are Lulu&Nana? Nobody knows, but at least the study suggesting they might die early has been retracted.

What became of the global governance of germline editing? Waiting for the Science academies and the WHO reports in 2020. 

What about the next baby-editing? Denis Rebrikov says he plans to do extensive safety checks before seeking approval to implant an edited embryo. 

Last but not least, how many couples are interested in germline editing? Very few, according to calculations published in The CRISPR Journal.