More than three years after the birth of China's first genetically modified baby, experimenter He Jiankui has been released from detention, but the protection these children should receive raises many ethical questions.

In his article published by the French newspaper "Le Monde", the writer Herve Morin said;

He Jiankui had hoped to win a Nobel Prize through this promising experiment, and instead was sentenced to 3 years in prison, as a Chinese biologist announced at the end of 2018 that he had genetically modified human embryos, resulting in the birth of 3 young girls. They are twins, Lulu and Nana, and then Amy.

These were called "CRISPR babies" because of the genome-editing technique used to modify the gene in order to protect them from HIV, which is carried by their biological parents.

CRISPR is a gene-editing technology that enables the modification of an organism's DNA.

The CRISPR technology is inexpensive and easy to use, and allows scientists to modify genes through genetic "scissors" that are similar in work to a text-processing program, and can detect genetic abnormalities and replace other elements in the DNA with them.

The writer explained that He Jiankui's announcement - which came during an international conference in Hong Kong - sparked great controversy in the entire scientific community;

It was considered that the technology used was not mature enough to ensure the safety of children, and that this "breakthrough" "sets a worrying precedent that would open the door to promising eugenics and the birth of children on demand".

Scientific and ethical condemnation

The writer stated that this scientific and moral condemnation of He Jiankui raised profound ethical questions. Despite the warnings of multiple scientific communities, researchers were unable to prevent some experts in China and the United States, from trying a form of "forbidden experiments."

The Chinese authorities had drawn the consequences of this fiasco, and placed He Jiankui in solitary confinement and then in detention, along with two collaborators, who were sentenced to 3 years in prison after the formation of the New Ethics and Standards Committee on Experiments Affecting the Human Genome. Particular modifications affecting germ cells, which are likely to be passed on to subsequent generations.

The writer noted that after more than 3 years of this experiment, which violated all the laws of nature, no information appeared about the girls' identity and health.

However, two Chinese bioethicists have re-launched the debate about their future, and about the "special protection" they should be afforded as "the new vulnerable minorities" in society.

Surveillance over several generations

Chinese bioethicists Kyu Rin Song and Lai Ryupang insist that “these children, as a vulnerable group, should enjoy and exercise the same basic rights, including the right to life, health, respect, privacy, protection of personal information, human dignity and inviolability.” discrimination and all rights as any natural person in civil law,” and urge the Chinese authorities to set up a “care and research center” aimed at monitoring these children and their potential grandchildren, and recommend that girls be informed of their situation when they grow up, as well as their potential husbands.

The experts also recommend regular sequencing of young girls to identify potential alterations as they develop.

It should also be monitored "with their consent" to include fetuses with which they may one day become pregnant, in order to follow the modifications made to the genetic heritage of humanity for future generations.

Compensation

The writer continues with the two experts who believe that while He Jiankui had planned to cover the medical expenses of the girls until they reached adulthood, insurance companies did not agree to this because they were born prematurely, and that the "CRISPR children" and grandchildren should benefit from He Jiankui's team and the university and the Chinese government, to compensate for the "damage to their genome".

Unlike Louise Brown, the first "test-tube baby" who was born 43 years ago in the UK;

The identity of the three girls has been kept secret, as no one knows to what extent the genetic manipulations they have undergone have modified their genomes.

Evaluate this 'genetic mess'

The author shows that the data collected by He Jiankui's team is fragmentary, and does not allow to evaluate the phenomenon of mosaicism, that is, the presence of modified cells in the same individual and the presence of unchanged cells;

“These children need regular follow-up. They should also be supported by public authorities throughout their lives. Of course, these restrictions raise the question of individual freedoms for these children. Rather, their follow-up raises many Ethical and societal questions.

On March 18, these proposals were the focus of an international round table organized by Joy Zhang of the University of Kent via video link, and published a summary of the discussions on April 5;

Bioethicist Sarah Chan from the University of Edinburgh has expressed concern that the call to protect children by her Chinese peers only exacerbates discriminatory practices by introducing a form of "bio-monitoring", while her colleague Benjamin Herlbutman fears that Children become a tool in the service of bioethics, and not the other way around, according to the author.

Genome Editing Discussions

The writer quotes geneticist Robin Lovell-Badge of the Francis Crick Institute in London as rejecting the term "genetic disorder" with regard to the three children, who may not differ substantially from those who naturally carry the targeted mutation;

For him, Lulu, Nana and Amy should be protected by "close monitoring", but they should be treated like any other child, while Helen O'Neill, from College London, considered that surveillance should not be a threat to the girls' privacy;

Saliva samples and questions from their parents to children are likely to suffice.

When life-long surveillance is necessary, it should remain a "family affair" and should be minimized as much as possible, noted Ayo Wahlberg, of the University of Copenhagen and in charge of the genome sequencing program for childhood cancers, and for Joy Zhang, the organizer of the roundtable, it is essential that Bioethicists from China, "the second most powerful country in the life sciences," contribute in a substantive way to discussions about genome editing.

Not a good idea

The writer continues to review the opinions of scholars;

It is not a good idea for Françoise Baylis, a philosopher and researcher from Canada's Dalhousie University, to establish a center dedicated to CRISPR children. From physicians and scientists committed to promoting the best interests of children. These physicians will have access to scientific data relating to children, which should be taken care not to disseminate."

In 2019, WHO Director-General Tedros Adhanom Ghebreyesus called on "regulatory authorities in all countries not to allow the resumption of new research in this area until the implications of the current trial are considered."

The writer emphasized that of the 96 countries that have regulations on this topic, 78 have policies governing human genome editing;

“Of these 78 countries, 75 prohibit human genome editing that can be passed on to subsequent generations,” says Françoise Baylis.