Births of 'gene-edited' twins puts spotlight on ethics, need for laws

23 January 2019 - 15:10 By nivashni nair
Chinese scientist He Jiankui at a summit on human genome editing in Hong Kong. The scientist claims to have created the world's first genetically edited babies - twin girls. He is currently under house arrest in Shenzen, China, and has been labelled irresponsible.
Chinese scientist He Jiankui at a summit on human genome editing in Hong Kong. The scientist claims to have created the world's first genetically edited babies - twin girls. He is currently under house arrest in Shenzen, China, and has been labelled irresponsible.
Image: Anthony WALLACE / AFP

News of another genetically modified baby on the way should force South Africa to fast-track investigations into existing gene-editing laws and guidelines.

University of KwaZulu-Natal bioethics and medical law lecturer Sheetal Soni says that South Africa, together with other countries, should put an effort into preventing "irresponsible experiments" from happening again until safety, scientific, ethical and legal aspects were discussed openly and broadly.

"The World Health Organisation has recognised this need, and is in the process of establishing an international panel of experts to develop international guidelines on this subject," she said.

Soni was responding to confirmation that controversial Chinese scientist He Jiankui had genetically modified another embryo.

"The additional pregnancy is also real and being monitored. Authorities confirmed that He, who is currently under house arrest in a government-owned apartment in Shenzen, China, will be punished in accordance with the law, and the case has now been handed over to the minister of public security," Soni said.

Human genome editing is banned in many countries.

Last November Soni was at the Second International Summit on Human Genome Editing in Hong Kong when news began to circulate that gene-edited twin girls had been born in China.

The children’s DNA had apparently been manipulated using gene-editing technology called CRISPR-Cas9.

"It is a biological tool that allows scientists to make changes to an organism's DNA to achieve a specific result, very much in the same way the word-processing programmes have an option to search for certain words in a document and replace them with other words," Soni explained.

Chinese scientist He Jiankui told the summit that twin girls had been born with DNA alterations to make one of them resistant to HIV.

Soni on Wednesday told TimesLIVE that authorities and investigators had confirmed that the twin girls had been born and were under medical supervision.

"The scientific community has responded by saying that there is no way of knowing the long-term effects of gene-editing, and while the children appear healthy now, only time will tell if the gene-editing has affected them in other significant and harmful ways," she said.

The legal issues surrounding He's experiment include forging documents and allegedly lying to the couples he recruited by telling them that they were participating in a vaccine trial.

"The ethical issues also weigh heavily, such as the fact that what he has done is experimentation on the human genome, which now affects two children.

"While genetically modifying them to make them resistant to contracting HIV, he has inadvertently made these two little girls 'prized cattle' in society who will value them for their genes," Soni added.  


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