Illegal? No, not in China

The recent news from China of a genetically altered pair of twins is frightening. He Jiankui, from the Southern University of Science and Technology of China, genetically altered the DNA of multiple embryos using the gene-editing technique CRISPR in order to disable the CCR5 gene, thought to be responsible for vulnerability to HIV.

Disable the gene in a person and they can be theoretically immune to the disease. This sounds like a wonderful use of modern technology, allowing people with HIV to safely have children. Wonderful indeed, except the technique has never before been used in this way, the implications of entirely disabling the CCR5 gene is nearly entirely unknown, and the HIV was apparently well controlled in the father (the mother was HIV-negative) and the pair could have safely had children taking well-tested, simpler measures, rather than gene-editing their own children. The experiment was carried out on a further six couples, but only one pregnancy resulted.

Was this experiment illegal? No, not in China. There are “guidelines” about the ethics of experiments, but these aren’t legally enforced like they are in the US and Europe. In saying that, however, the “rogue” scientist did perform this experiment at a private hospital, on unpaid leave from the University, and a full barrage of negative press, strong criticism from the Chinese scientific community, and state-led investigations are currently being sent his way. Most of the world appears to be horrified by this breach of human ethics, but could this modern version of a mad scientist actually have done some good?

The potential of gene-editing technology is extremely powerful. Many genetic diseases like Huntington’s and Alzheimer’s are known to stem from a select few genes and could be disabled before birth. If this experiment actually works, if the twins have no complications, gene-editing could be widely used sooner than we previously thought. The ethics are complex, however, and even testing of therapies doesn’t guarantee safety – consider only the horrendously sad case of thalidomide in the late 50s. Thalidomide was a drug given to women during pregnancy mostly to prevent morning sickness, but resulted in the birth of thousands of children with malformed limbs and hearts, due to there being an unknown second form of the drug made in the production process. While one form of thalidomide innocuously prevented morning sickness, the second form destroyed families.

If gene-editing isn’t treated with the proper respect it deserves, as a therapy with the potential to do powerful good and terrible harm, we may see another disaster like thalidomide in our lifetime.

This article originally published in the Glasgow Guardian on 15/12/2018

Written on December 15th, 2018 by Jamie Quinn

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Header image credits - Kirsten Colligan