The United Kingdom has announced an unprecedented research program aimed at better monitoring and treatment of genetic diseases, during which the genomes of 100,000 infants will be tracked, starting from the end of next year.
The £105 million ($129.1 million) program aims to find out whether a similar genome sequencing process should be deployed in the country during routine newborn check-ups, so as not to waste years diagnosing rare diseases, reports a local Arabic daily quoting AFP.
The study deals with about two hundred diseases that annually affect three thousand infants in the United Kingdom.
“We will look specifically at early childhood diseases that can be treated,” said Rich Scott, medical director at Genomics England, affiliated with the British Ministry of Health.
Among these diseases is biotinidase deficiency, which is a genetic disease that affects the body’s interaction with the vitamin biotin.
“If the child takes this vitamin, he will not have any problems” associated with the disease, which can lead to serious neurological disorders, said David Beck, one of the program’s officials.
“We want to reduce the incidence of diseases in children, not wait for them to occur in order to treat them,” he added.
In addition to the potential benefits and risks, public opinion will be considered regarding “storing the child’s genome data during his life, for reuse (…) in the future in predicting, diagnosing or treating diseases if children are infected later on,” according to Rich Scott.
Scott said during a meeting with journalists that the selection of participants in the program will start at the end of 2023 and will last for two years, stressing that the program is the largest study of its kind in the world.
The researchers intend to recruit a large group of participants from different backgrounds who do not necessarily have any prior disease risk.
Amanda Piccini, responsible for clinical trials for genetic issues at Genomics England, explained that the criterion for selecting participants in the program “means that a large number of parents we communicate with will not have prior knowledge of the presence of any genetic disease (…) within their families.”
In the end, if the trials are successful, the whole genome of the children will be collected, along with tests administered through newborn injections, which aim to monitor nine rare and dangerous diseases in children.
“If we can detect treatable diseases at an early stage and make cures available to patients quickly, we can improve the lives of people across the country,” Health Secretary Steve Barclay said in a statement. (AFP)