At Genomics England, our vision is a world where everyone benefits from genomic healthcare.
From the latest research to the lived experiences of those affected by rare conditions and cancer, Behind the Genes brings you closer to the people behind the science.
Each month, we release a deep-dive episode, alongside our Genomics 101 series - short explainers designed to make complex terms in genetics and genomics easier to understand.
Episodes
Wednesday Apr 28, 2021
Wednesday Apr 28, 2021
"How do we climb the ladder, from the participant representation side? How do we demonstrate that we are partners who would be worth working with, from the view of those in power? And whose ladder is it anyway?"
In this week's episode, Chris Wigley is joined by Jillian Hastings Ward, who is Chair of the Genomics England Participant Panel, a founding board member of the CureGRIN Foundation, and a participant representative on the National Genomics Board. Jillian's son, Sam, has the very rare genetic disorder GRIN1, which was diagnosed through the 100,000 Genomes Project.
Today, Chris and Jillian discuss the 8 rungs of the ‘Ladder of Citizen Participation’ - from the group of users being told to what will happen to them, to them having a role in decision-making.
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