Genome sequencing every new born baby ?

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A Tale of Two Surrogates
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Sequencing the genomes of newborn babies: What led to the UK Government's plans?
by Sarah Norcross

Genomics has been in the headlines in recent days, due to comments made by the UK's health secretary Wes Streeting that were published in the Telegraph. According to that newspaper and other reports, a ten-year health plan is due to be published imminently by the UK Government, and it will include an objective to make whole genome sequencing available for every newborn baby.

Research commissioned by PET (the Progress Educational Trust) in 2022 – conducted by Ipsos – showed that a majority of the UK public at that time (53 percent) supported the idea of whole genome sequencing at birth, as a way of screening for a larger number of rare genetic conditions than the nine that were being screened for by the 'heel *****' test (see BioNews 1148). The same research showed that just ten percent of the UK public were opposed to such an approach.

However, many practical and ethical challenges are involved in sequencing the genomes of newborns. These challenges are currently being investigated by the Generation Study, an NHS-embedded research study which is sequencing the whole genomes of 100,000 newborns. This study, in turn, forms part of the Newborn Genomes Programme (see BioNews 1172), one of several initiatives run by Genomics England.

Since 2014, PET has collaborated with Genomics England to produce public events that explore scientific, ethical and other aspects of whole genome sequencing. Speakers at these events have included experts, practitioners and advocates from a wide variety of backgrounds, including patients and their relatives. Discussion has ranged from lay-accessible explanations of the relevant technology to robust debate about the issues raised.

In recent years, six PET/Genomics England events have focused on the implications of sequencing the whole genomes of newborns. The most recent of these events took place shortly after the announcement that testing of newborns as part of the Generation Study had begun (see BioNews 1259 and 1261), while the preceding five events enabled ideas to be explored and considerations weighed up in public, ahead of the study's launch.

The focus of each event was as follows.

What Should Be Looked For? What Should Be Fed Back?
Consenting Adults, Sequencing Babies
What Research Can, and Should, Be Done with a Baby's Genome?
Genomic Data: A Resource from Cradle to Grave?
Workforce Implications for Healthcare Professionals and Beyond
Implementing the Generation Study
Films of all six events can be watched below. We believe that you will find them informative, as the UK Government considers rolling out this approach for all newborns. And the team at PET looks forward to holding further public discussions, as this work proceeds.

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Films of all six events can be watched below. We believe that you will find them informative, as the UK Government considers rolling out this approach for all newborns. And the team at PET looks forward to holding further public discussions, as this work proceeds.

1. What Should Be Looked For? What Should Be Fed Back?

If you can't see the film embedded above, you can watch it on YouTube.

2. Consenting Adults, Sequencing Babies

If you can't see the film embedded above, you can watch it on YouTube.

3. What Research Can, and Should, Be Done with a Baby's Genome?

If you can't see the film embedded above, you can watch it on YouTube.

4. Genomic Data: A Resource from Cradle to Grave?

If you can't see the film embedded above, you can watch it on YouTube.

5. Workforce Implications for Healthcare Professionals and Beyond

If you can't see the film embedded above, you can watch it on YouTube.

6. Implementing the Generation Study

If you can't see the film embedded above, you can watch it on YouTube.