The Observer’s view of the coming revolution in disease prevention and how Britain cannot afford to ignore it

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Hundreds of researchers, lawyers and ethicists from around the world will gather tomorrow at the third international summit on human genome editing at the Francis Crick Institute in London. For three days they will discuss developments in a field that promises to have major consequences for medicine over the rest of this century.

As they will make clear, editing of the human genome will soon allow doctors and scientists to alter the structure of genes and in turn bring about changes in physical traits, including reducing the risk of disease.

Attendees hope for a sober debate on this rapidly evolving field and will seek to avoid the kind of controversy that engulfed the previous Hong Kong summit in 2018, when renegade scientist He Jiankui announced to a stunned audience that he that modified the genetic makeup of three girls to make them resistant to HIV. This modification, made as embryos, could then be passed on to future generations.

Jiankui was imprisoned for his illegal activities, but the shadow he cast over the science of gene editing lingers. Thanks to his activities, the debates on the subject were redirected to focus primarily on the dangers of creating designer babies and the use of technology to enhance human abilities. Examples of the latter include proposals to create infrared-sighted soldiers or astronauts capable of withstanding the worst effects of radiation during long space voyages.

Debate on these questions is important because it is certainly not clear to what extent we should alter human genes to improve the physical characteristics of future generations. Yet these debates obscure the most obvious aspect of human genome editing — that it holds real hope in combating a multitude of life-threatening diseases that have resisted previous attempts at cures. These include inherited conditions such as cystic fibrosis, sickle cell anemia, muscular dystrophy, various types of cancer, diabetes, some forms of hereditary blindness, and other debilitating conditions.

The Third International Summit on Human Genome Editing takes place at the Francis Crick Institute in London. Photo: Daniel Leal-Olivas/AFP/Getty Images

Taking an embryo and altering its DNA so that it no longer carries a gene that predisposes it to either of these diseases would ensure that future generations would be freed from the burden of the inherited disease. We should not underestimate the relief this would bring. Around 2.4 million people in the UK live with a genetic condition. Editing the human genome offers hope for many of them – albeit not under current law. In the UK, as in most countries around the world, it is illegal to perform genome editing on embryos that result in pregnancy.

Allowing genetic editing of embryos would be a game changer for millions of people, although it should be recognized that many will oppose such a move on cultural, religious and ethical grounds. Some will argue that we have no right to tamper with the makeup of future generations. Others will argue that the technology will only be available to the wealthy. All of these are important issues that need to be resolved urgently.

Treatments that involve editing the human genome will likely be available within a few years, scientists predict. When they arrive there will be many affected families who will rightly seek access to them as soon as possible.

Given the state of UK legislation controlling embryo genome editing, we urgently need to have a national discourse on these issues, supported by a parliamentary debate. Genome editing is about to revolutionize medicine. We need to be prepared for the changes it will bring to the treatment of disease and facilitate its rapid delivery to those affected.

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