Gene genie almost out of the bottle
22nd May 2016
“In the UK, the 100,000 Genomes Project was launched in 2012 with £200m of public money and is at the forefront of international research in this area. The project will sequence around 100,000 genomes from 70,000 people with rare diseases and cancer, and their families.
Dr Anna Middleton, the principal social scientist at the Wellcome Trust’s Sanger Institute, who is working on a public engagement project for Genomics England, says the 100,000 Genomes Project research is pioneering and has huge implications for the NHS and patients.
‘Treatment costs could be reduced but we are also taking away the diagnostic odyssey that some parents endure. After waiting [in the past] years for a diagnosis for their child, a whole genome sequence may offer this in a matter of months,’ she says.
But collecting data on such an enormous scale raises significant ethical questions, which Dr Middleton is considering in two research projects. A project called www.YourDNAYourSay.org looks at attitudes towards big data and genetics, while if you wondered how you might start a conversation about genomics – and experts are certain an increasing number people will soon want to do so – then a series of amusing short films on www.GeneTube.org should help you to get a grip on the basics.”
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