Event Review: Third International Summit on Human Genome Editing

It's been five years since we last gathered for the Second International Summit on Human Genome Editing – and what an eventful five years it has been! From the aftermath of the previous summit to a more generalised shift towards patient-focused care, this Third Summit was always going to be an interesting affair. In saying that, as a first-time summit-goer who attended the event entirely online, I was pleasantly surprised by the experience.

In 2018, Dr He Jiankui – a Chinese scientist – announced that he was responsible for the first human babies ever born with edited genomes, specifically with the intention of developing genetic resistance to HIV. While certainly novel, Dr He's work was deeply out of step with standard experimental procedure and lacked serious ethical consideration. Although Dr He had intended to make this announcement at the Second Summit, news of his experiment was made public shortly beforehand, and so he was encouraged to use his presentation to explain himself and answer questions in a controlled environment. Unsurprisingly, Dr He's work overshadowed the Second Summit, and ultimately saw him imprisoned for three years (see BioNews 977 and 1029).

It was with this history weighing down on everyone that the Third Summit commenced. After introductions, the very first panel was about regulation in China following the scandal in 2018. The first speaker, Dr Yaojin Peng – assistant professor in intellectual property law at the Chinese Academy of Sciences, Beijing, China – offered the audience an overview of Chinese biotechnology regulations, discussing the laws and policies that existed prior to Dr He's experiments and the new ones that have been introduced since.

The second speaker, Dr Joy Zhang – founding director of the Centre for Global Science and Epistemic Justice at the University of Kent – gave a more sociocultural outline, detailing three ways China should continue improving biotech regulations: securitisation, ethicisation, and bottom-up participation. I appreciated the structure of this panel, as the dual perspectives left me with an improved understanding of the history and future of scientific regulation in China.

Unfortunately, not all of the panels were as well structured as the first. Occasionally, it felt as though speakers were rushing, either due to the previous speaker overrunning or due to the complexity of the information that was being presented. As a student and early career academic, less rushing and perhaps the provision of a little more context before diving into their research would have been helpful. But having access to the recordings afterwards helped mitigate this problem, and the panel moderators generally did a good job of keeping the summit on track.

Another key focus of the Third Summit was equity and access to treatment. This theme was apparent over each day of the event, with many speakers addressing it, who were not only from quite diverse backgrounds themselves, but also presented emerging research from a wide range of countries.

Professor Ambroise Wonkham – director of the McKusick-Nathans Institute at Johns Hopkins Medicine, Baltimore, Maryland – gave an engaging presentation about sickle cell disease in Africa. His presentation was made all the more impactful by how closely involved Professor Wonkham is in this research. Natacha Salomé Lima – a psychologist and bioethicist at the University of Buenos Aires in Argentina – gave a speedy overview of the future of precision medicine in Argentina and parts of Latin America, focusing on how to improve access and ensure that research is both equitable and ethical.

There was also a strong spotlight on patients, and the lived experience of people who had received genome editing therapies. Victoria Gray, an American woman born with sickle cell disease, gave a moving speech about her experience living with the disease and all the steps involved in fighting for a healthy life. After more than 30 years of opioid use to manage the disease, Gray became the first person to undergo somatic genome editing for sickle cell disease.

Upon receiving her own, freshly edited stem cells – which she called 'super cells' – Gray said that 'somehow I felt as though I was reborn that day,' and ended her presentation by saying that she can 'now dream again without limitations.' Her speech, which received thunderous applause and a standing ovation, really humanised the work being discussed at the summit. It gave attendees a profound insight into the importance and potential benefits of genome editing.

On the final day of the summit, Professor Robin Lovell-Badge – research group leader at the Francis Crick Institute, London, and PET's chair of trustees – introduced a panel focusing on germline genome editing. He explained that scheduling this discussion for the final day of the summit was an intentional choice, partially in response to the focus of the previous summit due to Dr He.

This was a wise decision by the organisers, as it ensured that somatic genome editing research – which has a better chance of impacting lives in the short term – was showcased first, with less initial attention on the more controversial areas of development. Of course, heritable genome editing remains an important and fascinating topic, but the choice to do justice to somatic genome editing was sensible after the events of the Second Summit.

Overall, I enjoyed my first summit experience. The online experience was largely problem-free, with few audio or video complications. While presenters did vary in how engaging they were, which is absolutely to be expected over a three-day event, the good presentations were exceptional. I imagine that there was a great deal of pressure on this summit to reinvigorate its reputation and secure its status as a professional, worthwhile event. I believe that it achieved this.