The UK Government Wants to Trace Your Child’s Genome


In November 2019, Matt Hancock, United Kingdom health secretary, reveals a high ambition: to sequence the genome of every child in the country. It will usher in a “genomic revolution,” he says, with the future of “predictive, preventative, personalized health care.”

Hancock’s dreams finally came true. In October, the government Office has partnered that Genomics England, a government-owned company, will receive funding to run a UK research pilot aimed at sequencing the genomes of between 100,000 and 200,000 children. Called the Newborn Genomes Program, the plan will be embedded within the UK’s National Health Service and specifically look for “actionable” genetic conditions — meaning there are treatments or interventions — and to be found in early life, such as pyridoxine- dependent epilepsy and congenital adrenal hyperplasia.

It will be at least 18 months before recruitment begins for participants, said Simon Wilde, engagement director at Genomics England. The program does not reach Hancock’s goal of including “every” child; during the pilot phase, parents will be recruited to participate. The results will be returned to the parents “as soon as possible,” Wilde said. “For most of the rare diseases we look for, the earlier you can intervene in a treatment or therapy, the better the longer -term outcomes for the child.”

The genomes of children will also not be identified and added to the National Genomic Research Library in the UK, where data will be available to researchers and commercial health companies to study, with the aim of creating new treatment and diagnostics. The aims of the research pilot, according to Genomics England, are to expand the number of unique genetic diseases diagnosed in early life to enable research into new therapies, and to assess the potential of the genome. a person may be part of their medical record that can be used in later stages of life.

Whole genome sequencing, the mapping of the 3 billion base pairs that make up your genetic code, can bring back enlightening insights into your health. By comparing a genome in a reference database, scientists can identify gene variants, some of which are linked to certain diseases. Since the cost of genome-wide sequencing has taken a nosedive (it now costs only a few hundred bucks and can return results within days), it promises to transform health care. became more attractive — and ethically murky. Translating a lot of genetic knowledge from millions of people requires protecting it from abuse. But proponents argue that tracing the genomes of newborns is possible. help diagnose rare diseases earlier, improving health later in life, and more in the field of genetics in general.

Back in 2019, Hancock’s words left a bad taste in Josephine Johnston’s mouth. “It sounds ridiculous, the way he says it,” said Johnston, director of research at the Hastings Center, a bioethics research institute in New York, and a visiting researcher at the University of Otago in New Zealand. “It has a different agenda, which is not a health -based agenda – it’s an agenda that is known to be technologically advanced, and has therefore won some kind of race.”



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