Couples who took part in a controversial experiment to alter human embryo genes were misled by the scientist responsible, who promised “smarter, better babies” and no risks, according to an advocacy group.

Beijing-based non-government organization Baihualin (White Birch Forest) said that He Jiankui, who carried out his experiments at the Southern University of Science and Technology in Shenzhen, offered to waive all expenses and sponsor their stay in the Chinese city.

He stunned the scientific world by announcing that human embryo genes had been changed in twin girls, called Lulu and Nana, making them supposedly immune to contracting the HIV virus. Other scientists have said the procedure was unnecessary and dangerous.

Participants told study financed by ‘state

 Chinese authorities have ordered He to cease the experiments and said his work is being investigated by the university. Participants were reportedly told the study was being financed by “state funds”, which meant the gene-editing service could be offered “free of charge”.

He was unrepentant during a talk at the second International Summit on Human Genome Editing in Hong Kong Wednesday, saying that his aim was to help HIV/AIDS patients have healthy babies. Eight couples chosen from a list of candidates recommended by Baihualin had agreed to take part in the study, though one later dropped out. 

In each case the husband had been infected with the HIV virus but not the wife. The couples had received hours of counselling before the procedure, with He promising that he would improve their children as well as making them resistant to HIV.

Chinese scientist He Jiankui speaks at the Second International Summit on Human Genome Editing in Hong Kong on November 28, 2018. - Organisers of a conference that has been upended by gene-edited baby revelations are holding their breath as to what He, the controversial scientist at the centre of the "breakthrough", will say when he takes the stage on November 28. (Photo by Anthony WALLACE / AFP)
He speaks at the Hong Kong international summit on Wednesday. Photo: AFP

The couple who quit told the Beijing-based LifeWeek magazine that He’s assistants promised “a high success rate proven in animal tests”, as well as the chance to “select the best from a number of genetically edited zygotes and embryos to have a healthier and smarter baby”.

The team would also help “dispose of any unwanted, unhealthy outcome”, the couple was told. They decided to drop out at the last minute, as they did not want to be treated like “lab rats”.

He reportedly told participating couples that the worse-case scenario could be that the “gene scalpel” (CRISPR-Cas9 technique) missed its target: the CCR5 protein might not link with the main human HIV receptor, and hence the babies would not be immune to the virus.

The Beijing News has reported that couples who agreed to participate were paid 280,000 yuan (US$40,000), on condition that they did not seek further compensation should the experiments go wrong.

While most scientists have reacted with dismay to the experiments,  some researchers in China are worried that the intervention by the  National Health Commission and the Ministry of Science and Technology could lead to overregulation that might stifle any hope of advances by their country in biotechnologies.

“Gene-editing is a powerful and great technology, and you cannot blame all biologists for one person’s misconduct,” a scientist with the Peking University told the Global Times.

However, Robin Alta Charo, professor of Law and Bioethics at the University of Wisconsin, told the newspaper during the Hong Kong summit that He’s actions had sparked mistrust from the public and government leaders.

Chinese scientists fear an overreaction 

Charo said He’s work was premature and her biggest fear was that it would make it more difficult for scientists to proceed in a responsible manner, as the government and advocacy groups might call for legal actions against any attempt even if the science had already developed.

The summit, which unexpectedly attracted global attention outside academic circles thanks to He’s study, concluded Thursday. Its organizing committee issued a statement stressing that any clinical use of germline editing “remains irresponsible at this time”.

The committee called for an independent assessment to verify He’s claims. It said his procedures had a number of flaws, ranging from a poorly-designed study protocol for ensuring transparency to a failure to meet ethical standards to protect the welfare of research subjects.

Read more: Chinese biologist who edited twins’ genes claims move was ethical

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