Source: Farm and Dairy

Babies’ Genes Edited in China: What You Need to Know and Why it Matters

Jordan Shapiro
Nov 27, 2018 · 3 min read

A flurry of articles have been published in the last 48 hours since the MIT Technology Review broke the news of Chinese scientist He Jiankui’s experiment to edit the germline genes of a pair of twins. He’s work is under investigation by the Chinese government and his claims have yet to be verified, with details on the story rapidly developing. In the meantime, the following is a quick summary of why this experiment is so significant and shocking to the global community, assuming the experiment occurred as announced:

  1. Embryos Brought to Term
    This is the first time a human germline gene editing experiment (an attempt to edit the genes of a human embryo, which can be passed to the next generation) has been carried to term. Prior experiments with human embryos have not been implanted back into a human to develop.
  2. Breaking a Global Moratorium
    The experiment breaks a global moratorium on human germline gene editing that was established in December 2015 during the first International Summit on Human Gene Editing (ISHGE). The moratorium states that “it would be irresponsible to proceed with any clinical use of germline editing” until the technology is derisked and there is broad global consensus on its appropriate application, at which point any trials “should proceed only under appropriate regulatory oversight.”
  3. Unexpectedly Successful Gene Edits
    The embryos allegedly survived He’s gene editing and were born without any complications, which implies a level of accuracy in He’s gene editing procedure that was previously a subject of debate. Human embryo studies to date have demonstrated varying levels of accuracy, raising doubts about the feasibility for a CRISPR-edited baby to be delivered healthily.
  4. Treatment or Enhancement Ambiguity
    The specific edits He has attempted (eliminating the CCR5 gene in attempt to prevent HIV) walk the line between what is considered treatment versus enhancement. The ISHGE and broader scientific community has condemned any attempt at germline gene editing for human enhancement and encourages scientists to focus exclusively on the treatment of inevitable genetic diseases. By trying to preventing a possible disease rather than curing an inevitable genetic condition, He’s experiment entered into ambiguous ethical territory.
  5. A Secret Experiment
    This experiment was conducted with apparently no oversight, resulting in outrage from the scientific community. He’s work also furthers concerns that the rapidly increasing accessibility to gene editing technology will lead to dangerously unsupervised experimentation.
  6. Cynicism Around Chinese Leadership
    Chinese scientists have consistently been at the controversial frontier of human gene editing, in some cases evoking criticism due to an apparent lack of ethical oversight. Most notably, Junjiu Huang’s 2015 research on editing human embryos was the first known attempt of its kind and sparked global outrage as the scientific community rushed to instate ethical guidelines around the use of gene editing (despite these embryos being discarded). He’s experiment exacerbates concerns about minimal Chinese oversight for human gene editing and a perceived Chinese indifference towards the ethical gravity of the technology.
  7. Timing with the Second ISHGE
    This news broke right before the start of the second ISHGE, which is currently underway in Hong Kong. The Chinese Academy of Sciences, one of the three co-hosts of the first ISHGE (alongside the U.K.’s Royal Society and the US National Academies of Sciences, Engineering, and Medicine), had quietly backed out of hosting the conference.
  8. Implied Future Experiments
    In addition to announcing this secret experiment, He has been actively recruiting for a clinical trial to continue his work. Given the uproar in the past two days, it is unlikely that this trial will take place, but even its planning confirms some fears about how gene editing technologies may be used before reaching conclusions about their ethical implications.

Have thoughts on the latest news in human gene editing? Any angles missing from the He Jiankui story that I may have missed? Comment below if so!

Genaerrative

Genaerrative is the center of public conversation on human gene editing. Read up on the field and get involved!

Jordan Shapiro

Written by

VC at NEA, Schwarzman Scholar (Tsinghua University) ‘17, Proud Stanford grad (BS ’15, MS ‘16), Mayfield Fellow, biotech futurist and theater enthusiast.

Genaerrative

Genaerrative is the center of public conversation on human gene editing. Read up on the field and get involved!

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