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.
Looking for conditions in the genome
Cerebral palsy, epilepsy and early intervention
Engaging with parents, patients and the public
What genes and variants should be studied in newborns?
How should Genomics England use lists?
Important work by small charities
At the end of this conversation, Dr Charles Steward mentions the work of the following charities:
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...
Progress Educational Trust, 140 Grays Inn Road, London WC1X 8AX, UK
Tel: +44 (0)20 7278 7870 Email: firstname.lastname@example.org
Limited company registered in England and Wales no 07405980
Registered charity no 1139856