In November 2019, Matt Hancock, then the British Minister of Health, Uncovered lofty ambitions: Sequencing the genome of every baby in the country. He said that it will usher in a “genomic revolution” and the future will be “predictive, preventive, and personalized healthcare.”
Hancock’s dream is finally coming true. In October, the government Announce Genomics England, a government-owned company, will receive funding to conduct a research pilot in the United Kingdom to sequence the genomes of 100,000 to 200,000 babies. The project is called the Newborn Genome Project and will be embedded in the British National Health Service System to specifically look for “operable” genetic conditions-those of existing treatments or interventions-and manifest them early in life, such as pyridox Alcohol-dependent epilepsy and congenital adrenal hyperplasia.
Simon Wilde, director of participation at Genomics England, said it will take at least 18 months to start recruiting participants. The plan will not reach Hancock’s goal of including “every” baby; in the pilot phase, parents will be recruited to join. Wilde said the results will be reported back to the parents “as soon as possible.” “For many of the rare diseases we are looking for, the sooner you intervene in treatment or therapy, the better the long-term results for your child.”
The baby’s genome will also be de-identified and added to the National Genome Research Library in the UK, where researchers and commercial health companies can mine data for research to develop new treatments and diagnostics. According to Genomics England, the purpose of this research pilot is to expand the number of rare genetic diseases screened early to enable research on new therapies and explore the potential of a person’s genome as part of their medical record. Can be used later in life.
Whole-genome sequencing, the mapping of the 3 billion base pairs that make up your genetic code, can bring enlightening insights into your health. By comparing the genome with a reference database, scientists can identify genetic variants, some of which are related to certain diseases. As the cost of whole-genome sequencing has dropped sharply (now only a few hundred dollars, and results can be returned in a day), its promise to the healthcare revolution has become more tempting—and ethically ambiguous. . Uncovering the vast genetic knowledge of millions of people requires protecting it from abuse. But supporters believe that sequencing the newborn’s genome can help diagnose rare diseases earlier, improve health in later life, and promote the development of the entire field of genetics.
Back in 2019, Hancock’s words left a bad taste in Josephine Johnston’s mouth. “It sounds ridiculous to hear him say this,” said Johnston, research director of the Hastings Center at the Institute of Bioethics in New York and a visiting researcher at the University of Otago in New Zealand. “It has another agenda. This is not an agenda based on health-it is an agenda that is considered technologically advanced and therefore wins a certain kind of competition.”