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LEGAL THINKING ABOUT OUR EDITED SELF
PRIDE AND PREJUDICE
At the end of November 2018, Chinese researcher He Jiankui revealed the birth
of the first gene-edited babies, Nana and Lulu." The babies’ names, of course, are
pseudonyms; the twins’ birthplace and their real names are unknown. He Jiankui’s
glory did not last long, as even the Chinese authorities have since distanced
themselves from experimental interventions in human subjects. It seems that the
first announcement of a new biotechnological method is often scandalous, and
the research results are surprising. Racing to be the first always involves keeping
secrets from competitors. However, He Jiankui was not in a competitive position,
as scientific consensus at the moment is against this kind of intervention; besides,
the intervention was not even justified.
He Jiankui announced his work on gene editing at the Second International
Summit on Human Genome Editing, in Hong Kong, on November 25, 2018. The
news was treated as a scientific success, but not long after the announcement
several experts on bioethics suggested that such a surprising transformation
could only occur if ethical approval procedures were ignored. It turned out that
transparent ethical procedures indeed did not take place. Human gene editing,
like many other biotechnological innovations, involves terminological novelties,
too. In this case, changing the previous terms genetic manipulation or genetic
modification to gene editing, also changed the connotation and suggested a much
smaller intervention or correction with a better result.
In all, 22 embryos were gene-edited, and 11 embryos were used in six
implantation attempts before Nana and Lulu were born. The procedure can raise
many kinds of ethical concerns. One of them was the result they wanted to achieve
by gene editing. The intervention’s goal was to confer genetic resistance to HIV.
Dr He claimed that he received approval from Shenzhen Women and Children’s
Hospital, but he failed to obtain authorization from his university or the four
other hospitals from which some of the gene-edited embryos came. Even though
the couples participating in the experiment were informed, the focus of their
consent was much more on the copyright of photographs of the unborn babies than
highlighting the novelty of the procedure. Is it appropriate to ask for the public’s
help in the acceptance of a scientific announcement instead of going through prior
professional challenges? Although He made an attempt to publish his results in a
scientific journal a few days before the Hong Kong Summit, the CRISPR Journal,
founded not long before, had no idea that the babies had actually been born.
15 BBC News, He Jiankui Defends ‘World’s First Gene-Edited Babies, BBC News (28 November
2018), https://www.bbc.com/news/world-asia-china-46368731.
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