Whole genome sequencing of babies

Bioethics Briefing Note

Published 27/03/2018

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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.

Project team

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Catherine Joynson

Assistant Director

Catherine is part of the senior management team. She is responsible for leading a range of Council projects including the active response programme (e.g. Bioethics briefing notes) and its horizon scanning work. Catherine speaks on behalf of the Council on a range of ethical issues.

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Ran Svenning Berg

Research Officer (Maternity leave)

Ranveig undertakes research to support the Council’s work and monitors developments in areas of interest to the Council. Prior to this she was the Communications Officer at the Council, and before that managed communications at the International Action Network on Small Arms (IANSA) and completed a BA in Development Studies and International Relations at London Metropolitan University.

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Arzoo Ahmed

Research Officer (maternity cover)

Arzoo is undertaking research as part of the Council’s active response programme and its horizon scanning work. Prior to joining the Council, Arzoo was director at the Centre for Islam and Medicine and a research associate at the Office for Public Management. Arzoo is completing an MA in philosophy at King’s College London, and graduated with a BA in Physics and an MPhil in Medieval Arabic Thought from the University of Oxford.

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