CRISPR People. The Science and Ethics of Editing Humans by Henry Greely

Maybe this has been the most interesting, enlightening, eye opening and fulfilling book I have read this year. In the sense that a learned a lot about a previously obscure topic to me. It discusses Clustered Regularly Interspaced Short Palindromic Repeats CRISPR technology to edit genes in plants, animals and humans, either ex vitro, on tissues, or in vitro on living organisms.

The book explains the CRISPR technology in simple terms. That is, how it is able to modify genes by cutting out, or replacing bad genes with good genes. A good way to visualise CRISPR would be via the text editor analogy, where it can find a misspelled word, cut bits of it and/or replace the wrong bits with the correct ones.

About 4 years ago CRISPR became a viral topic when a Chinese scientist, Dr He Jiankui, claimed to have produced 3 CRISPRed babies. Two twin girls and then a third baby months after. Dr He aim was to change a gene, the way it appears in some Nordic people, which makes them immune to some forms of HIV. Greely explains everything that is known about He’s motivations, planning, carrying out of the experiment and the way he was planning to reveal it to the world. The book also covers how the scientific community reacted and what tangible actions they have taken since.

When I first learned about the experiment I read quite a few comments supporting Dr He. Saying he was a hero who deserved the Nobel prize for eradicating one of the most feared illnesses of our time. People didn’t understand why Dr He was sent to prison for his actions. This book clearly explains why. Not only that. It explains all the ethical issues arising from the technology and the (written and unwritten) rules that Dr He broke and the possible consequences for the CRIPSP babies. After reading the book it is easy to see why Greely concludes that He’s experiment was “grossly reckless, irresponsible, immoral, and illegal”.

But what did Dr He do wrong? To start he didn’t do any pre-clinical work. Actually no-one had done that kind of work before. He didn’t experiment with ex vitro animal or human embryos, to asses the safety and efficiency of the procedure. Very little is known in the area and a lot of work needs to be done before even thinking about editing human embryos. Maybe decades of work. So He embarked on the job with almost zero preparation. Also Dr He did not provide a good enough reason for deciding to work on that particular mutation. The book goes in-depth with this issue but the point is that the risks of changing that gene very much outweigh the benefits.

Greely explains how Dr He’s failed to produce sound informed consents to be signed by the parents of the potential edited children and how they were not aware of all the risks involved. Apparently Dr He didn’t even get (ethical) approval from any of the institutions he was working with, the university, fertility clinics or hospitals. And if the above wasn’t enough the book explains how Dr He failed to achieve what he wanted (the gene mutation HIV immunity). Dr He knew that the embryos had different mutations from the intended and even after knowing this, he decided to implant them in their mother’s uterus. As far as I understand one of the twins got the intended gene changed, not to a known variant (as in Nordic people) but to a different unknown one. The result might be that this twin might not only be not immune to HIV but also in risk of other unknown genetic conditions. The other twin got only one copy of her chromosome changed. The other remained as it was. So no immunity either and a condition called mosaicism, where the girl will have cells with different DNA. The effects of all these changes are unpredictable and possibly dangerous. Nothing is known about the third baby.

Anyways there is much more in the book, for example, an in-depth discussion on how to deal with CRISPR technologies in the future. Is it inherently bad or can it be used for good causes?    A very interesting book indeed.