Whole genome sequencing of babies

Briefing note (March 2018)

Whole genome sequencing of babies 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.

Previous work

Contact us

Nuffield Council on Bioethics
28 Bedford Square
London
WC1B 3JS

bioethics@nuffieldbioethics.org

+44 (0)20 7681 9619

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