From the event website:
"There are 7000 rare diseases affecting 3.5 million in the UK alone. 75% affect children and include rare cancers, cystic fibrosis and Huntington’s disease. 80% of rare diseases are caused by a defect in the genetic blueprint, sometimes a single spelling mistake in the three billion letters that make up the human genome, yet can have devastating consequences. How is the genomic revolution helping?"
Your DNA Your Say!
Dr Anna Middleton (Head of Society and Ethics Research, Wellcome Genome Campus)
Big Data and DNA now go hand in hand. This is pivotal for exploring the link between genes and disease. The bigger the datasets the better. Most DNA data is ‘de-identified’, i.e. names and addresses have been removed but it will soon be possible to identify a person from their DNA alone. Would this stop you donating your DNA data for research? What harms can come from this? We explore what public across the world have said and how their views are shaping policy.
Middleton A (2019). Your DNA Your Say! "The genomic revolution: searching for a cure for the 1 in 17" Pint of Science. Cambridge, UK, 22nd May. Spoken presentation/public engagement