The UK has announced plans to sequence the genomes of 100,000 newborns to detect about 200 rare genetic diseases starting next year..

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In New York City, a similar project already underway will screen 100,000 newborns across the city for slightly more diseases..

The goal of the project is to identify treatable diseases that standard newborn screenings cannot detect.. If sequencing provides early warning of a problem, the child may be able to get help to avoid permanent disability or even death..

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However, whole-genome sequencing of newborns raises a number of ethical questions, including who will have access to the data and whether it will unnecessarily worry parents by identifying genes that may never cause serious disease..

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In many countries, a drop of blood from the heel of every newborn is now screened with predominantly biochemical tests for several to dozens of genetic diseases.. They range from metabolic disorders, which can be prevented with a special diet, to muscle diseases, such as spinal muscular atrophy, which are treated with medications..

Whole genome sequencing, which costs much more - up to $1,000, can reveal many more diseases, such as thyroid diseases, which can lead to brain damage if left untreated..

Genomics England's $129 million Newborn Genomes Program will offer parents-to-be in England receiving assistance through the National Health Service (NHS) to register starting late 2023. The goal is to examine 100,000 newborns in 2 years.

To avoid alarming gene variants whose risk is unclear or which only cause disease in adulthood, only 200 diseases caused by well-studied genetic variants that are almost certain to cause symptoms by age 5 will be tested.. They are all treatable, and measures can range from a simple vitamin supplement to a bone marrow transplant..

The project is expected to identify about 500 newborns with one of the genetic diseases. If such testing were carried out throughout the UK, it would identify about 3,000 children a year with these diseases..

The public has supported the project, but some experts say the money could be better spent expanding the UK's standard screening, which currently covers only nine diseases.. Others argue that subsequent screening results will put a burden on an already overburdened NHS. "

New York City project launched in September garnered less attention. Led by Columbia University geneticist Wendy Chang, this project will test the DNA of 100,000 newborns for 158 treatable diseases.. Parents can also add 100 more neurological disorders that cannot be cured but that early speech and physical therapy can help..

Chang says she doesn't have data on the total cost of the 4-year project backed by sequencing companies and the National Institutes of Health, but "

Both studies, which will also monitor whether children with problems receive the care they need, are designed to help policy makers decide whether newborn sequencing should become a routine part of health care.. The national, comprehensive coverage of the UK health service " In the United States, such answers may be harder to come by given the fragmented health care system, Chang admits..

Recall that soon in Ukraine, patients will have free access to drugs for spinal muscular atrophy (SMA). " One bottle of this medicine in pharmacies costs from 250 thousand hryvnias. Now patients, especially children, will be able to receive this drug for free..