Excerpt from talk (from 4'23" to 5'22"):
"One, just, last quick point: if we are doing that kind of adjudication and balancing of interests [between the human right of everyone to benefit from the progress of science and the right to privacy and to data protection], researchers and even lawyers don't always have the right answers about what an appropriate balance is. So increasingly what we see, especially in large-scale genomic research projects, is a need to incorporate the views of the public and the participants into governance. OK? So this is actually an international survey run out of the [Wellcome] Genome Campus here by Anna Middleton, it's called 'Your DNA, Your Say.' It's available in multiple languages. So this is just one approach of integrating people's perspectives into governance. So this is a survey about 'what do people think about their data being shared around the world?' And there's many other ways: you can consult patient groups when you design consent forms, you can include them on your access committees, for example. But this participatory approach is important as we move towards these sort of balancing approaches to governance."
Thorogood A (2018). Ethics and Consent/Governance. Human Cell Atlas General Meeting. 8 March, Wellcome Genome Centre, Cambridge, UK