Anna Middleton PhD MSc RGC
Creative research leader who delivers high impact social science
This website was last updated in 2016, for more recent work you can now find me at the Wellcome Genome Campus Society and Ethics Reserch Group in Cambridge, UK
Your DNA Your Say: Participant Values Research for Global Alliance for Genomics and Health
What we did
As a member of the Global Alliance for Genomics and Health Regulatory and Ethics Working Group, I suggested we needed to gather large scale attitudes towards genomic data sharing.
A 'Participant Values' Task Team was set up, co-chaired by myself and Natasha Bonhomme (who represents patient advocacy groups). The Task Team designed and endorsed the subject matter for the survey and contributed to piloting and recruitment.
Prof Heidi Howard and Emilia Niemiec spent February 2016 with me in Cambridge; together we drafted the survey and wrote the scripts for the films that sit in it. We also conducted the three pilot studies and face validity testing. Heidi and Emilia will be organising the translation of the survey into French and Polish respectively.
a 'Making of' film about the survey
Online Survey
Funding
The project is supported by the Wellcome Genome Campus in allowing Anna time to focus on it. We would like to particularly acknowledge the Wellcome Trust for paying for the films.
Media, Examples of Print and Online
Article on project 13th June 2016
Article on project 26th May 2016
Article on project 23rd May 2016
