Scientists Propose Measures to Ensure Well-Being of Gene-Edited Babies

Chinese experts suggest surveillance and protection measures for the world's first three gene-editing babies, as well as their descendents, while He Jiankui, who created the these babies, would be reportedly released soon after three years in prison.
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In 2018, He, a genome-editing researcher at the Southern University of Science and Technology of China in Shenzhen, Guangdong Province, shocked the world as he claimed to have created genetically modified humans, which are the world's first.

He was sentenced to three years in prison in December 2019. Citing unnamed sources, some media said that He would be released in near future, reviving concerns over the condition of the gene-edited babies, including twins referred to as Lulu and Nana and another named Amy.

Amid concerns, the Global Times learned from Qiu Renzong at the Chinese Academy of Social Sciences in Beijing and Lei Ruipeng at the Huazhong University of Science and Technology in Wuhan, Hubei Province, that they had drafted a proposal to related authorities to call for the government to develop policies to protect the three children and their descendents from discrimination and gene diseases caused by the editing.

The proposal suggests the babies' whole genome should be examined regularly to know whether it is normal, if not, what is abnormal. After they reach the age of 18, they should be informed by their parents with the assistance of relevant genetic professionals, that their genome has been edited.

The proposal also calls for the authorities to establish a special research and care organization, which may be called the Human Genetic Genome Editing Research and Care Center, and to allocate special funds (or establish a fund with public and private investment).

The Global Times learned from Lei that the proposal would be published China Science Daily recently.

It has already been reported in an article published on the website of the Nature magazine on Friday, in which international researchers said that it is the first to discuss how to manage the children's unique situation and welcomed it, but some also concerned that the proposal would lead to unnecessary surveillance of the children.

Qiu told the Global Times on Monday that, depending on the characters of gene editing and current development of the technology, it is necessary to conduct surveillance.

Qiu explained that gene-editing techniques are immature at current stage with high off-target rate and potential abnormalities even if the target is hit. In particular, the abnormalities may be passed on through reproduction to their children and their children's children.

Surveillance is inconsideration of the well-being of these children. Or, how could we detect the abnormality after gene editing? Qiu asked.

Preimplantation genetic diagnosis should also be performed on early embryos with their consent during pregnancy to observe whether the embryo genome is abnormal and how is the severity of the abnormality, so as to help them make reproductive decisions, Qiu noted.
This article originally appeared on the Global Times website.
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