Scientists in China are losing touch with patients of gene editing trials: Report

China has asked hospitals, universities to submit reports on all gene-editing trials since 2013.

Researchers in China have zoomed ahead of every other country in experimenting with gene-editing in humans over the past few years.

The technology that powered this boost, a tool called CRISPR-Cas 9 to edit DNA inside living cells, has come under fire from a recent controversy from one such researcher, He Jiankui, whose study led to the birth of twin girls "Lulu and Nana", who Jiankui claims were given immunity to HIV from having their genes edited.

There were seven couples that were part of Jiankui's study that had gene-edited babies implanted for a pregnancy, they have been out of view since the start. And this continues to be truly close to two months since the world first learned of the daring study.

Now, a new Wall Street Journal report claims that another Chinese startup 'Anhui Kedgene Biotechnology' has lost touch with at least some of the patients in their gene-editing trials. The company was working with late-stage cancer patients whose DNA they altered towards treatments and a potential cure.

 

Lapses in communication between patients and researchers is terrible news for gene-editing, which is getting a lot of heat for long-term effects it may have in humans. It means no one really knows for sure how the edited genes in such studies could affect them and their future generations.

“Since we do not fully understand the human genome and are still developing knowledge of CRISPR-Cas technology, we need to monitor the intended and unintended consequences over the lifespan of patients,” Jennifer Doudna, one of the inventors of CRISPR gene editing told The WSJ.

China is now also asking hospitals and universities to submit thorough reports on all human gene-editing trials conducted since 2013, according to a South China Morning Post report.

The follow-up from such studies in China could affect gene-editing research well beyond China’s borders.

Scientist He Jiankui attends the International Summit on Human Genome Editing at the University of Hong Kong in Hong Kong, China November 28, 2018. Reuters

Scientist He Jiankui attends the International Summit on Human Genome Editing at the University of Hong Kong in Hong Kong, China November 28, 2018. Reuters

Jiankui who claimed to have produced the world’s first gene-edited babies works at the Southern University of Science and Technology in Shenzhen, China,  and says that he used CRISPR gene-editing technology to alter the DNA in several human embryos.

He even made an unusual choice of platform for his official announcement: YouTube.

Soon after news about the experiment broke, the researcher and his team were caught in a sea of questions from ethical experts. The university, Jiankui's colleagues and the Chinese government pleaded ignorance to not having the faintest idea that such a study was underway.

This prompted China to finally look into its scientists’ human gene-editing trials. The government expanded its 'social credit system' to include misconduct by researchers as in the case of Jiankui.

China’s sudden awareness about what’s happening within the walls of its labs could hopefully prevent other researchers from following in the footsteps of Jiankui.

2018 has been an eventful year and here's our comprehensive list of year ender stories.

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