English Gene Company announced on the 12th that it plans to collect 100,000 newborns from next year to carry out whole-genome sequencing in order to help screen for rare genetic diseases. According to the company, the study, the largest of its kind in the world, may pave the way for the UK to promote whole-genome screening for newborns. However, the project has raised concerns among some ethicists.
This project is called the "Newborn Genome Project" and costs 105 million pounds (about 900 million yuan). England Genetics, which is wholly owned by the British government, will cooperate with the UK National Health Service (NHS) to conduct whole-genome sequencing of 100,000 newborns in England within two years. Pregnant women and their spouses who are receiving treatment in the National Health Services System can start signing up later next year.

August 8, people walk on the streets of London, England. Xinhua News Agency
According to the well-known journal Science, this project only focuses on about 200 diseases caused by genetic mutations that have been fully confirmed by research. These diseases will almost certainly cause symptoms before the child is 5 years old and can be treated. The treatment includes a simple supplement to vitamin and bone marrow transplantation. Richard Scott, chief medical officer of
, said the research results “will allow policy makers to fully understand the situation and decide whether and how to incorporate whole genome sequencing into future neonatal screening programs and promote it.”
Scott estimates that whole genome sequencing will benefit about 3,000 newborns each year if promoted throughout the UK.
, chief clinician of the "Newborn Genome Project", said David Beek, the newborns participating in the project will be as representative as possible to achieve racial diversity. Scotland , Welsh and Northern Ireland may join this project later.
According to the British " Financial Times ", British newborns will currently be fed heel blood at four or five days of birth to screen for 9 genetic diseases. Whole genome sequencing will read all expressions in the newborn's genetic code .
According to Science, a whole genome sequencing set costs about US$1,000 (about RMB 6,978), but it is becoming cheaper.
According to AFP , citing Scott, the project also helps understand the public's attitude towards lifelong storage of genomic data. In addition, the genetic information collected by the company may be used to help meet individuals' future medical needs, such as "predicting, diagnosing or treating diseases."
UK Health and Social Welfare Secretary Steve Barkley said genomics “has great potential in revolutionizing the way health care is delivered”.

On April 1, a medical worker stood in an ambulance at a hospital in Liverpool, England. Xinhua News Agency
The British health department has previously announced two genome research projects. One is to perform genome sequencing of up to 25,000 people from non-European backgrounds, and the other is to evaluate sequencing techniques to improve the accuracy and speed of cancer diagnosis.
Although the "Newborn Genome Project" consulted with medical ethicists during the planning process, it still caused multiple ethical questions, such as who will obtain research data, whether the child's parents will have unnecessary concerns, etc.
UK Gay's and St. Thomas National Healthcare System Trust Clinical Geneticist Francis Flint said: "Screening newborns with whole genome sequencing is a step towards unknown. We must not rush to use this technology until both science and morality are ready."
(Xinhua News Agency)