The report describing the creation of the world’s first gene-edited babies creates an ethical quandary for scientific journals
More than a year after the birth in China of twin girls known as Lulu and Nana, the world’s first gene-edited babies, the affair is still shrouded in secrecy. US researchers and universities have given incomplete or equivocal accounts of their involvement with He Jiankui, the Chinese biophysicist who used CRISPR to make changes to the girls’ DNA while they were still embryos. In China, if you distribute a news story to WeChat asking what happened to the twins, state censors will issue a takedown notice.
No reason is given. No appeal is possible.
The silence hasn’t served only to conceal what really happened to the girls. It is hiding the scientific facts themselves. Starting late last year, manuscripts written by He describing the creation of the twins were considered for publication by at least two supremely influential journals: Nature and JAMA, the Journal of the American Medical Association. Neither has published his work.
The reason isn’t only that He’s project trampled ethics rules. Another major obstacle to a full account is that He has not been seen or heard from for months. He didn’t make it to his home village for Chinese New Year in February, his father told us. His lab and data, according to one insider, were seized by Chinese authorities last December, and his original team of 10 has scattered to the four winds. An American collaborator, Michael Deem of Rice University, is the subject of an investigation by that institution; it has come to no public conclusion or disclosed any findings. So there may be nobody who can answer questions, expand upon the data, or carry out follow-up experiments, as scientific review by a journal often demands.
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