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FILM: Sarah Norcross and Dr Charles Steward discuss whole genome sequencing and newborn screening

22 November 2021
By BioNews
Appeared in BioNews 1122

This film documents a conversation between Sarah Norcross (director of the Progress Educational Trust, the charity that publishes BioNews) and Dr Charles Steward (lead for patient advocacy and engagement at Congenica, and parent of two children with severe neurological disorders).

The conversation formed part of the event 'Whole Genome Sequencing at Birth: What Should Be Looked For? What Should Be Fed Back?', which is discussed elsewhere on BioNews this week. A film of the full event will be made available on BioNews in due course.

(If you cannot see the 'in conversation' film below, click here to view it.)

The main themes of the conversation are as follows.
00:00 Looking for conditions in the genome
02:21 Cerebral palsy, epilepsy and early intervention
05:30 Engaging with parents, patients and the public
08:37 What genes and variants should be studied in newborns?
09:13 How should Genomics England use lists?
10:27 Important work by small charities

At the end of this conversation, Dr Charles Steward mentions the work of the following charities:

22 November 2021 - by Dr Jess Buxton 
A new pilot study embedded in the NHS will explore whether and how to offer whole genome sequencing to newborn babies...
15 November 2021 - by Joseph Hawkins 
Whole genome sequencing of NHS patients with rare diseases can provide diagnoses that could lead to more personalised care or treatment and potentially save the NHS money, a study has shown...
15 November 2021 - by Christina Burke 
Outcomes for child cancer patients could be dramatically improved by sequencing their genomes, a study has shown...
8 November 2021 - by Dr Yvonne Collins 
Currently, only nine conditions are screened for in the UK, which is fewer than many other high-income countries. Although many patient groups advocate for new conditions to be added to the list, this has not happened...
31 August 2021 - by Jen Willows 
Offering healthy people genetic screening could provide clinically important information in over 15 percent of cases...
12 July 2021 - by Dr Eleanor Lynam 
Members of the UK public are largely supportive of the use of whole genome sequencing in newborn screening, according to a national public dialogue...
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