Your DNA Your Say: Participant Values Research for Global Alliance for Genomics and Health
What we did
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
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.