Conclusions

Whole genome and exome sequencing has the potential to improve the care and treatment of seriously ill babies, and the NHS will use this technology increasingly in future. The consequences of sharing any additional findings with parents are not yet known, and how genomic data should be stored, accessed, and used requires further public consideration.

There is ongoing debate about whether genome sequencing could be used to expand NHS newborn screening to include additional specific genetic conditions, and how the benefits and harms of screening programmes should be weighed. Using whole genome sequencing to look opportunistically for a broad range of conditions and traits in babies who are not ill is widely thought to be unacceptable within the medical genetics community. However, some parents express a desire to receive a broad range of health-related results from whole genome sequencing and they might be able to access such results from commercial providers in the future.

Previous work

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