Hundreds of researchers, lawyers and ethicists from across the world will tomorrow gather at the Third International Summit on Human Genome Editing at the Francis Crick Institute in London. For three days, they will debate developments in a field that promises to have considerable consequences for medicine for the rest of this century.
As they will make clear, human genome editing will soon allow doctors and scientists to alter the structure of genes and in turn induce changes in physical traits, including reducing disease risk.
Those attending will be hoping for a sober debate on this rapidly developing field, and will strive to avoid the kind of controversy that engulfed the previous summit in Hong Kong in 2018, when renegade scientist He Jiankui announced to a stunned audience that he had changed the genetic makeup of three girls in a bid to make them resistant to HIV. This modification, made when they were embryos, could then be passed on to future generations.
Jiankui was jailed for his illegal activities, yet the shadow that he cast over the science of gene editing lingers. Thanks to his activities, debates on the subject have been diverted to focus mainly on the dangers of creating designer babies and the use of the technology to enhance human capabilities. Examples of the latter include proposals to create soldiers with infrared vision or astronauts who can withstand the worst effects of radiation on lengthy space journeys.
Debating these issues is important, for it is certainly not clear how far we should alter human genes to augment the physical attributes of future generations. Nevertheless, these debates obscure the most obvious aspect about human genome editing – that it carries a real hope of tackling a host of life-threatening ailments that have defied past attempts to cure them. These include inherited conditions such as cystic fibrosis, sickle cell anaemia, muscular dystrophy, various cancers, diabetes, some forms of hereditary blindness and other debilitating conditions.
By taking an embryo and altering its DNA so that it no longer carries a gene that will predispose it to one of these diseases would ensure that future generations will be freed from the burden of inherited illness. We should not underestimate the relief this would bring. In the UK, around 2.4 million people live with a genetic condition. Human genome editing offers hope for many of them – although not as the law stands. In the UK, as in most countries worldwide, it is illegal to perform genome editing on embryos that lead to pregnancy.
Permitting gene editing of embryos would be a game-changer for millions of people, although it should be acknowledged that many will be opposed to such a move for cultural, religious, and ethical reasons. Some will argue that we do not have the right to tinker with the makeup of future generations. Others will claim the technology will only be available to the affluent. These are all critically important points that need to be resolved as a matter of urgency.
Treatments involving human genome editing are likely to be available within a few years, scientists predict. When they do 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 the genome editing of embryos, we need to have a national discourse, backed by parliamentary debate, on the issues as a matter of urgency. Genome editing is about to revolutionise medicine. We need to be prepared for the changes that it will bring to the treatment of illness and to facilitate its swift deployment to affected individuals.
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