"Data is at the heart of genomics. But, there is no data without people who are willing to be sequenced. Most will have their first contact with genomics through participation in a research project. How they engage, and interact, with genomic information is going to have a significant effect on how the technologies will be integrated into healthcare. Despite strong discussions, there is startlingly little data to help guide the ethics and policy around the reporting of such information back to patients.
Dr Anna Middleton, of the Wellcome Trust Sanger Institute, headed up an extensive ethics study as part of the Institute’s ‘Deciphering Developmental Disorders’ project. This produced the world’s first large scale empirical data, giving all sorts of people (from patients through to scientists and health professionals) a voice on what they want from genomics. Some of the findings of which, are about to be published in the Lancet.
We travelled up to the Sanger Institute to meet Anna and hear more about the story behind the research ahead of its publication, and what it means for healthcare moving forward."
Middleton, A, 2014. Interview: Letting the People Decide. Front Line Genomics, December 2014 (Issue 1), pp 30-35