Baby-Gene Editing; Ethical and Scientific Controversy – Blog Post by Asrar Qureshi

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The following information is based on Reuters/ BBC reporting.

Professor He Jiankul, Associate Professor in the Southern University of Science and Technology in the southern city of Shenzhen announced recently that he had performed gene editing to help protect two babies from future infection with AIDS virus. He released videos on YouTube on Monday and issued a statement that he used gene-editing technology known as CRISPR-Cas9 to edit the genes of twin girls to create the first gene-edited babies. The babies were born in this month.

The announcement created a huge uproar in the scientific community in many countries and the action was universally condemned by everyone.

More than one hundred scientists, many of them in China, said that the altering of human genes was unethical, risky, unjustified and ‘crazy’. The Chinese scientists said that it harmed the reputation and development of biomedical community in China.

“The biomedical ethics review for this so-called research exists in name only. Conducting direct human experiments can only be described as crazy” the scientists said in their letter, a copy of which was posted by the Chinese news website, the Paper.

The Southern University of Science and Technology where Mr. He is associated, said it was unaware of the research project and that Mr. He had been on leave-without-pay since February.

China’s National Health Commission said on Monday it was ‘highly concerned’ and had ordered provincial health officials ‘to immediately investigate and clarify the matter’. The medical ethics committee of government in the city of Shenzhen said it was investigating the case.

CRISPR-Cas9 is a technology that allows scientists to essentially ‘cut and paste’ DNA, raising hope of genetics fixes for diseases. However, there are concerns about its safety and ethics.

Presently, the technique is being experimented only on discarded embryos of IVF cases. It is also mandatory that the experimented embryos be destroyed after experiment. Due to serious concerns about potential misuse of such technology, the activity is sternly regulated.

The dream of having ‘designer-babies’ is an old one. Scientists have been toying with the idea of editing fetuses to have desired features; eye color, hair color, enhanced IQ, etc. However, great human, ethical, genetic risks are associated with such technology. If an editing goes wrong, it may possibly be transferred to next generations. And what if one gene-manipulation starts mutating itself further? Imagine!

Outside of China; Julian Savulescu, a medical ethics specialist at Britain’s University of Oxford said, “if true, this experiment is monstrous”.

Kathy Niakan, an expert at the Francis Crick Institute in London said, “If true, this would be a highly irresponsible, unethical and dangerous use of genome editing technology”.

Associate Professor He defended his work saying “I understand my work will be controversial, but I believe families need this technology. And I am willing to take the criticism for them”. He said he began his work in the second half of 2017 and enrolled eight couples. All of the potential fathers were HIV-positive. Five chose to implant embryos, including the parents of the twin girls, identified only by the pseudonyms Mark and Grace. The babies’ names are Lulu and Nana.

Notwithstanding the controversy, indignation and condemnation, we sincerely hope that the experiment done by Mr. He will not trigger an escalated race to do more in this direction.

Reporting by Alexandra Harny and John Ruwitch in Shanghai; Kate Kelland in London; Additional reporting by Holly Chik, Anne Mare Roantree in Hong Kong; Philip Wen in Beijing; Editing by Neil Fullick, Darren Schuettler, Robert Birsel.