Whole genome sequencing of babies

This briefing note explores the ethical issues raised by whole genome sequencing of babies.

Overview

• Whole genome sequencing is cheaper and faster than ever, but interpreting the results is difficult, time-consuming, and expensive.
• Whole genome sequencing is starting to be used in the NHS to help obtain a diagnosis for some seriously ill babies.
• What genetic information should be shared with parents, and how genetic data should be stored, accessed, and used requires further public consideration.
• There is debate about whether genome sequencing could be used to expand NHS newborn screening to include additional genetic conditions.
• There is broad agreement within the genetics community that it is not acceptable to use whole genome sequencing to look opportunistically for a broad range of conditions in babies. However, some parents express a desire for this kind of information and might be able to access commercial whole genome sequencing in the future.

Project team