Ministers must consider changing the law to allow scientists to carry out genome editing of human embryos for serious genetic conditions – as a matter of urgency. That is the key message of a newly published report by a UK citizens’ jury made up of individuals affected by genetic conditions.
The report is the first in-depth study of the views of individuals who live with genetic conditions about the editing of human embryos to treat hereditary disorders and will be presented at the Third International Summit on Human Genome Editing, which opens at the Crick Institute in London this week.
Scientists say that in a few years, they will be ready to use genome editing techniques to alter genes and induce changes in physical traits, such as disease risk, in future generations. In the UK, around 2.4 million people live with a genetic condition. These include cystic fibrosis, sickle cell disease, muscular dystrophy, various cancers, and some forms of hereditary blindness.
“Genome editing offers the prospect of preventing such conditions affecting future generations but there needs to be a full national debate on the issues,” said Prof Anna Middleton of Cambridge University, the project’s leader. “These discussions need to start now because genome editing is advancing so quickly. Many affected individuals want to debate the ethical issues and explore what implementation might look like.”
Genome editing acts like a pair of molecular scissors that can cut a strand of DNA at a specific site, allowing scientists to alter the structure of a gene, a form of manipulation that does not involve the introduction of DNA from other organisms. In the UK, as in most countries worldwide, it is illegal to perform genome editing on embryos that lead to pregnancy.
However, clinical trials of genome editing treatments are progressing in many countries, and a citizens’ jury recently gathered at the Wellcome Genome Campus, near Cambridge, to discuss under what circumstances the British government should consider changing that law. The 21 jurors all had personal experience of a genetic condition. Some were parents of children who died from a genetic condition and others had an inherited condition, such as cystic fibrosis .
After four days of presentations by scientists, lawyers and other experts, the group overwhelmingly voted to urge the government to consider changing the law to allow genome editing of embryos.
“The ethical discussions have been derailed by an abstract focus on designer babies when we have patients dealing with life-threatening diseases who want their voices heard,” Middleton said. “People affected by genetic disorders recognise it’s time to embrace a genuine discussion on whether embryo research should be enabled and what a pathway to implementation looks like. They have made it clear we should proceed down that road with urgency.”
