UK ministers urged to consider changing law to allow genome editing of human embryos: Report
According to Cambridge University, over 2.4 million people in the UK are currently living with a genetic condition. It is illegal in the UK to perform genome editing on embryos that lead to pregnancy.
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A citizens' jury in the United Kingdom (UK) has urged ministers to consider changing the law to allow scientists to carry out genome editing of human embryos for serious genetic conditions. The jury is made up of individuals whose lives have been affected by the hereditary disease. The report, published in Wellcome Connecting Science, has made "15 recommendations centered around transparency, inclusivity and equal access to treatment that should be considered in deciding whether to legalise editing of human embryos to treat genetic diseases."
According to Cambridge University on Tuesday (February 28), over 2.4 million people in the UK are currently living with a genetic condition. This includes disorders, such as cystic fibrosis or sickle cell anaemia, which are caused by variations in a single gene and can be inherited in families.
It is illegal (in the UK) to perform genome editing on embryos that lead to pregnancy, the university said. "The NHS does offer a service to couples who carry a heritable genetic trait to screen IVF embryos, meaning only embryos without the inherited condition are implanted. However, this approach is not suitable for everyone," it added.
The views of the individuals most affected by genetic conditions are timely due to two reasons, the 3rd International Summit on Human Genome Editing starting on Monday (March 6) and UK legislation due to be debated in parliament later this year.
Professor Anna Middleton, the leader of the project from Wellcome Connecting Science and the University of Cambridge, said that though all jurors have personal experience of an inherited genetic condition, their views on the editing of human embryos were varied, nuanced and complex.
"Many of the discussions were emotional, and the responsibility felt by the jurors to represent wider society in their deliberations was clear," Middleton said.
She added that when the Human Fertilisation and Embryology Act is debated in Parliament and discussions emerge on the editing of human embryos, it is imperative that the voices of patients are heard as part of this.
What do the jurors have to say?
Andrea-Reid Kelly, one of the jurors said that before the jury, she did not know much about editing of human embryos or have a strong opinion about it. "I’m a bit of a fence-sitter by nature. But by the end of the jury, I went from a neutral opinion to being in favour of parliamentary debate about potentially changing the law to allow editing of human embryos to treat genetic conditions," Kelly said.
Kelly was born with a significant heart condition, which was later learnt to be caused by Noonan syndrome. She said this is a genetic condition that can cause heart problems, distinctive facial features, small stature and specific learning difficulties such as dyslexia. She had heart surgery when she was four years old and then again when she was 33.
"So far as we know, neither of our daughters has Noonan syndrome. Because the gene that causes my case is unknown, we can’t test them to know for sure," she added. Kelly also said that she met another person with the syndrome some years ago, and could identify with their experience and bond over challenges.
Another juror, Brenda Poku, suffers from sickle cell disease and her brother also has the condition. Sickle cell disease is a genetic condition caused by a faulty gene that affects the shape of red blood cells. One of the most common symptoms is bouts of pain, which are very unpredictable in timing and severity, sometimes requiring strong painkillers like morphine or even hospitalisation.
This condition is particularly common in people with African or Caribbean ancestry. Poku is originally from Ghana and moved to the UK to study for her doctorate. "I was originally a nurse, but now I research sickle cell disease from the perspective of patient experience and service provision," she said.
"Being in healthcare, I had some knowledge of genome editing before I took part in the citizens’ jury. There are advanced genome editing trials for sickle cell disease, with some of the participants having been ‘cured’. Researchers are monitoring them to make sure there are no unintended long-term side effects, but it’s likely there will be a cure for sickle cell in my lifetime," Poku said.
"During the jury event, I gained a new appreciation of why some people may want to take advantage of human embryo editing and would say that swayed me towards thinking it needed to be considered," she added.
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