Not Good: Scientists in China Losing Track of Gene-Edited Patients
Gene editing has the potential to save lives and prevent devastating diseases, but the technology is still new and the ramifications of such experiments remain largely unknown. So, when a patient’s DNA has been edited using CRISPR-Cas9, researchers keep a close eye on them to track their progress and any problems that may arise. Or, at least, they’re supposed to. That has not been happening in China.
Editing DNA can lead to autoimmune disorders and other problems later on. It’s important to know how patients are doing so important tweaks can be made.
Jennifer Doudna, a biochemist at the University of California, Berkeley, and a co-inventor of CRISPR, said:
“Since we do not fully understand the human genome and are still developing knowledge of [CRISPR-Cas9 and related technologies], we need to monitor the intended and unintended consequences over the lifespan of patients.”
Recent History: Creating the First Gene-Edited Babies
Controversial scientific experiments are not new to China. In November 2018, Chinese scientist He Jiankui claimed to have created the world’s first gene-edited babies – twin girls born with immunity to HIV, the virus that causes AIDS. Jiankui said that a third pregnancy involving gene-edited embryos may be in the process.
The announcement sparked fear and outrage among the global scientific community, and shortly after the news broke, the Chinese government expanded its social credit system to include infractions made by researchers in an effort to crack down on scientific misconduct in that country. The Chinese government also ordered Jiankui’s medical team to shut down the trial.  
Jiankui doesn’t even have the support of scientists in his own country, despite the lax laws governing gene-editing. China’s Vice Minister of Science and Technology called the experiment “unacceptable” and said the ministry is strongly opposed to such research. 
What Jiankui claims to have accomplished is not legal in China, nor is it legal anywhere else in the world. In both China and the U.S., it is legal to edit human embryos, but they must be destroyed after a few days and may not lead to pregnancy. 
It is also legal in both countries to alter a living person’s DNA (called “somatic gene-editing”) to treat diseases like cancer and the blood disease hemophilia. That is because, unlike embryonic gene-editing, somatic gene-editing does not lead to heritable genetic changes.
Yet, these treatments are still in their infancy, too, which is why responsible oversight and an abundance of caution is so important.
While China and the U.S. share similar laws regarding gene-editing, they do not share the same governmental oversight. There is no equivalent to the U.S. Food and Drug Administration (FDA) in China, and doctors can proceed with a clinical trial based on approval from their hospital’s ethics board alone.
As of January 2018, at least 86 patients in China have had their DNA edited with CRISPR, and the private startup Anhui Kedgene Biotechnology Co. is behind most of them.
“One of Kedgene’s projects has lost touch with patients whose DNA was altered, according to a person familiar with the matter. Kedgene founder Mandy Zhou said one trial didn’t complete the research as planned, and as a result lost touch with patients. No patients died during treatment in that trial, she added.
Another Kedgene trial, at the Anhui Provincial Hospital, treated 18 patients, according to Wang Yong, who ran it. Many participants died as their cancer grew, Dr. Wang said, without giving a specific number. Dr. Wang said he was asked by the science ministry this month to send a report on the trial, the first time authorities in Beijing sought information about it since it began more than a year ago.”
According to the South China Morning Post, China is requesting that hospitals and universities submit detailed reports on all human gene-editing trials conducted since 2013. 
Such irresponsibility not only endangers lives, but puts humanity at the cusp of realizing frightening possibilities, including so-called “designer babies,” in which embryos are edited to make the resulting human superior to others in various ways, including intelligence, looks, and talent.
 Daily Mail