Biologist He Jiankui (center), Robin Lovell-Badge (left), the moderator of the session about human embryo editing, and Matthew Porteus from Stanford University answer questions at the Second International Summit on Human Genome Editing in Hong Kong on Nov 28. (Parker Zheng / China Daily)
What sort of lives the two genetically edited twin babies may have was scrutinized by experts on Wednesday at the human genome editing summit in Hong Kong.
The baby girls, born this month, are said to be healthy after a genome-editing procedure of the embryos aimed to immunize them against the HIV, explained He Jiankui, the researcher behind the controversial operation.
During his scheduled talk at the summit on Wednesday, he said there would be regular monitoring and assessments of the babies - continuing until they reach 18. He hopes that when the girls become adults they will continue to participate.
He declined to reveal their identities, citing China’s policy regarding people’s privacy in cases involving HIV/AIDS.
Other scientists expressed a number of concerns about the twins from different perspectives.
Robin Lovell-Badge, head of the Laboratory of Stem Cell Biology and Developmental Genetics at the Francis Crick Institute in the UK, believed the twins’ identity should be kept secret. This would protect them from any social stigmatization involving HIV/AIDS.
Calling on people to respect this, Lovell-Badge reminded reporters at the summit that they will face enormous pressures with everyone watching them.
“We hope we will learn from proper clinical studies done on them as they grow up - if that is possible,” Lovell-Badge said. He added that “we must not know their identity because that would be very unfair”.
There is also debate about the extent of government supervision on the family.
Some scientists argued that life-long institutional study of the girls and their families should be conducted.
Qiu Renzong, a professor at the Chinese Academy of Social Sciences, said that as the twins pass down their genetic alternations, the human gene pool could be affected. Close monitoring of the twins and their offspring will therefore be necessary, Qiu stressed.
However, Lovell-Badge believes the babies will not have any major influence on the human gene pool as there are only two of them; moreover, it is believed one was not edited successfully to achieve the desired outcome of immunization from HIV.
Asked about the possible impact of the genetic alternation of the twins on their lives before they are 18, Lovell-Badge said he did not the answer.
He just said they should be given full freedom to make their own choices and be encouraged to explore their full potential.
Zhai Xiaomei, a professor and executive director of the Center for Bioethics of the Chinese Academy of Medical Sciences and Peking Union Medical College, said the twins were just like anyone else. Therefore, no one should restrict their freedom or their right to get married and have children.
“If they do not consent to be monitored and followed up, no one should meddle with their lives,” Zhai said.
Meanwhile, some scientists raised doubts about the feasibility of assessing side effects brought about by their edited genes - even if there is life-long supervision.
Wei Wensheng, a researcher at Peking University's School of Life Sciences, said we might never know what the side effects are.
Wei said that just like normal people, gene-edited babies will have flu, emotional problems or other abnormalities. “People may blame all these possible symptoms on gene-editing, but how can scientists decide which of these are not caused by other factors?” Wei said.
Dennis Lo Yuk-ming, a professor of chemical pathology at the Chinese University of Hong Kong, suggested a supervisory team involve medical professionals as much as possible. This is in order to evaluate any possible side-effects developing. Even with this, Lo said, no one could be totally sure what side effects might result.
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