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?'.
(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: