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

The films were directed by Tim Pope, award winning film maker; and made by Loudcity. They sit within the survey, designed and hosted by the Wellcome Trust Sanger Institute web team.

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

Anna Middleton