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Issues for Programs to Consider

Efforts to screen infants for genetic disease through whole-genome sequencing have to balance how many conditions to test for and what parents want to know, the Economist writes.

It adds that a project led by Genomics England is taking a deliberative approach by holding discussions with parents and doctors. Early screening could, in turn, lead to early diagnosis and treatments for hundreds of genetic conditions — the BabySeq project in the US screened about 1,000 genes, the Economist says. But it notes that the parents consulted by Genomics England appear to prefer a whittled-down list that focuses on childhood conditions, rather than ones that arise in adulthood.

Even then, the Economist notes that screening cannot currently distinguish between a few conditions that may either crop up early or later in life and that some of the conditions included in screening may have no established treatments or be fatal in childhood.

At the same time, studies like these have to grapple with keeping children's data safe and private, even as times change, it adds.