March 10, 2023, by Brigitte Nerlich
Human genome editing summit, London, 2023
Ceci n’est pas un blog post. As I have no time to write anything proper for a few weeks, these are just some notes and pointers.
This non-post is ‘about’ the Third International Summit on Human Genome Editing which took place at The Francis Crick Institute in London from 6 to 8 March. I couldn’t listen in to everything but there are some good twitter threads which give .you some nice insights into what’s was going on. Here is the programme. And here is short definition of ‘human genome editing’:
“Genome editing is a method for making specific changes to the DNA of a cell or organism. It can be used to add, remove or alter DNA in the genome. Human genome editing technologies can be used on somatic cells (non-heritable), germline cells (not for reproduction) and germline cells (for reproduction).” (WHO)
Tweets and reactions from the conference
A good way to find out what was going on at the summit was to follow the science writer Kai Kupferschmidt who has a real knack for summarising conference proceedings in succinct tweets (day 1. day 2, day 3). Kai’s pithy summary of the summit was: “Somatic human genome editing: Yay! Give it to more people for less money! Hereditary human genome editing: Booh! Unacceptable now, let’s keep talking about whether it ever will be.” Kai also related Robin Lovell-Badge‘s (chair of the summit) closing statement in this thread.
The Royal Society issued a summary which you can read here.
Human genome editing and civil society
For people reading this blog, one session in particular should be of interest. It was on ‘Civil Society and Human Genome Editing: Roles and challenges in public engagement’. An overview is available to download.
There were contributions by ARRIGE, the Association for Responsible Research and Innovation in Genome editing (Lluis Montoliu), the Global Observatory for Genome Editing (Sheila Jasanoff), the Global Citizens’ Assembly on Genome Editing (Simon Niemeyer) and the Sama Resource Group for Women and Health (Sarojini Nadimpally),
[But there are also other important talks sprinkled all over the conference, about equity, ethics, governance, patient experiences etc. – explore the programme!]
Some background literature
If you are interested in the topic, there is lots to read about human genome editing but some books stand out (and this is, of course, a personal choice)
Philip Ball’s How to Grow a Human
Matthew Cobb’s The Genetic Age: Our Perilous Quest To Edit Life
Adam Rutherford’s Control: The Dark History and Troubling Present of Eugenics
Henry T. Greely’s CRISPR People: The Science and Ethics of Editing Humans
and this book by Françoise Baylis, who also tweeted from the summit: Altered Inheritance: CRISPR and the Ethics of Human Genome Editing
There is also a good article by Vivien Marx on The Crispr Children
And there is of course much more, including a report published by the Hastings Center and based on stakeholder engagement on human germline editing (human genome editing for reproduction), its governance challenges, policy options and public engagement (in which I was involved).
A more recent report details the outcomes of a citizens’ jury of individuals whose lives have been affected by hereditary disease. They “voted in favour of asking the UK government to consider changing the law to allow genome editing of human embryos to treat serious genetic conditions.” Anna Middleton tweeted on this from the summit.
After summit reflection
I have just seen this tweet from the Hastings Center: “JOIN 3/14, 3pm ET: A recent summit looked at the state of human genome editing, where the scandal of China’s CRISPR babies was fresh in the minds of many. @FrancoiseBaylis, @ASU‘s Ben Hurlbut, & HC scholar @bioethicsjosie will examine key takeaways.” I will be away then but if you want to register, please follow this link!
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