What’s the public view of genomic data-sharing?
‘Data-sharing’ has become a popular rallying cry in the world of genomics. The prevailing view is that without broad spectrum collaboration between institutions, businesses and academics, precision medicine is going to go nowhere, very slowly.
But what do the public, the patients from whom this data is collected, understand about sharing genetic data? Would they even be happy contributing their data to an international research effort? These are just some of the questions that a new research effort from the Global Alliance for Genomics and Health and the Wellcome Genome Campus are looking to explore.
Your DNA Your Say is a survey designed to take the global public temperature towards genetic data handling, and introduce participants to the medley of associated practical and ethical issues.
“This is a very ambitious project,” admits Dr Anna Middleton, Principal Social Scientist at the Wellcome Genome Campus, who leads the project. “We’re aiming to gather opinions from across the world. There is a huge evidence gap for us globally. At the moment there’s a risk of policy being made about how data are shared without having a clear public voice on the issue.”
“We’re not only asking the general public, but also patients, research participants, scientists, health professionals, young people, old people. We want everyone to take part,” said Anna. “All of us have an online footprint of one sort or another and most of us engage with healthcare services. Our health data is online too and it is very useful for research — are we OK with it being used in all sorts of ways by other people? Our survey aims to find out.”
Seeking innovative ways to engage the public with genomics forms a large part of Anna’s work. Earlier this year she launched Socialising the Genome, a video project that aims to make genomics a more social concept, developing narratives and themes that can open up this complex, somewhat arcane field to wider public understanding.