The second international summit on human genome editing was held at the University of Hong Kong between 27 and 29 November. Like most events of similar nature, the summit hosted researchers, policymakers, and institutional representatives, who actively share their latest findings and seize the opportunity to meet and forge new collaborations.

Nothing particularly news worthy can be foreseen in spite of the excitement. Perhaps this is the kind of calm Dr. He Jiankui from Southern University of Science and Technology of Shenzhen, China, is waiting for before revealing the World’s first genetic edited babies were born earlier the month. An account which stormed most science headlines the whole of last week.

He said “he feels proud” but also apologized for this “unexpectedly leak”. The genetic edited babies were a pair of Chinese female twins – Lulu and Nana, whose father is HIV positive. He used CRISPR-Cas9, a well-known genome editing technique to impotent CCR5, a gene which encodes protein to permit HIV’s entry into the cell, making the babies immune to HIV infection.  On top of Grace and Mark, parents of the twins, He also recruited seven other pairs of couples, all of the male partners are HIV positive.

A medical Rashomon

The Chinese media was eager to find out if He was telling the truth. On the consent forms, He told his participants that all expenses would be paid for via research funding from Southern University of Science and Technology but the institution denied so. Via an official disclaimer on its website, the University said He has been on leave since February and they were not involved nor aware of his commitment.

Likewise, the two hospitals (i.e., Shenzhen Luohu Medical Institution and Shenzhen Harmonicare women’s and children’s hospital) believed to assist He also denied their involvements. If that’s the case, where did He get his funding and expertise from? He believed to be the shareholder of at least seven companies in China, including Direct Genomics. The company had received 40 million RMB (estimated $5,800,000) subsidies from the Shenzhen municipal government and planned to be listed in Hong Kong and US two years ago but was not successful. It’s unclear if He has control over the money.

Interestingly, just a day before the human genome editing summit in Hong Kong, Associated Press published an article which gave a snippet of He’s work. Lin Zhitong, an administrator working for Shenzhen Harmonicare, the hospital which denied helping He, was endorsing his work, saying that they “think this is ethical”. In fact, Michael Deem, a bioengineering professor from Rice University was present when participants were giving their consents to He.

He did not formally published his work. Following his disappearance, there may never be a chance to confirm what He had done. Nevertheless, He’s impulsiveness made international audience wonder if the Chinese research community values ethics. It also put public in question if a technology in research phase will ever be fit for humanity.

Technological pessimism

He is fully aware of the risks of gene editing. However, it’s unsure if he had conveyed them to his participants. Disabling CCR5 may not entirely ensure the HIV immunity of the twins. There is still a chance that the virus may spread with CCR4 or other receptor. In his video, He compared his attempt with In Vitro Fertilization (IVF), saying what he is doing this for good will.

There was no mention that the twins may be susceptible to other medical conditions as a result of impaired CCR5. Most importantly, gene editing performed on the twins is not confined within them. There is a chance that the genetic difference passes onto the next generations.

The unknown consequences are reasons why most people remain skeptical or even adopt a pessimistic view towards scientific advancement.

China is rather rigid in terms of how genetic information is being processed. Now, the public urged the Chinese government could update its 15-year-old human reproduction and related genetic policy, to keep up with the present scientific advancement. On Monday, the World Health Organization had also requested for a panel to study gene editing and underline its safety guidelines.

Let’s hope that proper ethical standards and safety procedures can be established soon. Otherwise, there may be more individuals like He, those who are probably killing a medical opportunity before it was born.

Author Bio

Hazel Tangsynthetic gene empathy chinese artificial intelligence data medicine healthcare ai

A science writer with data background and an interest in current affair, culture and arts; a no-med from an (almost) all-med family. Follow on Twitter.