OCR Output

JUDIT SÁNDOR

The public knows relatively little about the birth of Nana and Lulu. The mother
gave birth by emergency cesarean section. The twins’ birthplace was not made
public; all we know is that He Jian-kui left by plane to be there at the time of their
birth. The goal of the procedure was to make the babies resistant to HIV. Therefore,
on one of the babies’ genes, the so-called CCR5 located on chromosome 3, He
artificially created a CCR5A32 allele, with the help of the CRISPR “scissors”.’* In
order to contract HIV, it is necessary to have a functioning CCR5 gene. Therefore,
the aim of the experiment was to alter the function of this gene.

As a result of the international outrage following the incident, the case was
also subject to court proceedings. That is how it emerged that a third child was
also born. A court in Shenzhen found that He and two collaborators forged ethical
review documents and misled doctors into unknowingly implanting gene-edited
embryos in two women. The twins were born in November 2018, but it has not
been made clear when the third baby was born; in fact, no information at all has
been provided about the third child. He was sentenced to imprisonment and fined
3 million yuan (350,000 £). Experts from all over the world agreed that there are
safer and more effective ways to prevent HIV infections. The experiment was
deemed irresponsible, premature and unjustified, because it exposed the babies
to risks associated with gene editing without any benefit."

PROFESSIONAL AND ETHICAL RESPONSES

China’s first reaction stressed He’s success and its pride in the great accomplishment
of Chinese science, but the general climate had changed by November 26, as a
group of 122 Chinese scientists and ethicists published a joint statement through a
Chinese application, calling the experiment ‘crazy’ and asking for serious penalties
to be applied against him.

They also emphasized that it is forbidden to conduct such an experiment on
human beings. Subsequently, many other Chinese scientists condemned the
experiment. On November 26, the Chinese government opened an investigation
and referred to the violation of several regulations, but it has not been made at all
clear which laws were broken by He’s work. On November 29, the Vice-Minister

16 Myles W. Jackson published a rather interesting book on the history of CCR5 gene and
Delta 32 allele, which is of great importance for both understanding how HIV infections
develop and curing them. See Myles W. Jackson, The Genealogy of a Gene, Cambridge, MA,
The MIT Press, 2015.

" Kiran Musunuru, Opinion: We Need to Know What Happened to CRISPR Twins Lulu
and Nana, MIT Technology Review (3 December 2019), https://www.technologyreview.
com/2019/12/03/65024/crispr-baby-twins-lulu-and-nana-what-happened/.

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