Excerpt from article:
"How might people want to use genomic technology? Are they even interested in it? These are questions that formed the heart of the GenomEthics study, our social sciences research from the Wellcome Trust Sanger Institute, part of the Deciphering Developmental Disorders project.
Despite a lot of rhetoric, we don’t really know how potential research participants want to engage with researchers in sequencing studies. Answering this requires the delivery of social sciences research in multiple ways, with multiple populations. Our survey (see www.genomethics.org) of nearly 7000 people from 75 different countries shows that 98 per cent want to be informed if researchers using their genetic data stumble upon indicators of a serious preventable or treatable disease...."
Middleton A (2015) If you know it, I'd like to know it too. Article for the Newsletter of the British Society for Genetic Medicine. Issue 53, October 2015