Your DNA, Your Say
The 'Your DNA, Your Say' project is a global online survey gathering public attitudes towards genomic data sharing.
Genetic research has the potential to unlock so many answers in medical diagnoses and treatment. However, this can only be successful if DNA and medical data is donated by thousands (or ideally, millions) of people, and then stored in online databases where it can be accessed by scientists and researchers from all over the world. But how do people feel about their genomic data (their entire blueprint, more personal than a fingerprint or an iris scan) being incorporated into Big Data? This project aims to find out.
The findings will offer a public voice to policy created by the Global Alliance for Genomics and Health. The project was created by the Participant Values Task Team on behalf of the Regulatory and Ethics Group at GA4GH, is led by Anna Middleton and is being managed by Lauren Farley from the Society and Ethics Research Group. The individual survey items were created by Anna, Heidi Howard (Professor of Bioethics, Centre for Research Ethics & Bioethics, Uppsala University) and Emilia Niemiec (Doctoral Student, University of Bologna) with support from the Participant Values Task Team.
The survey contains 9 innovative films that explain what genomic data sharing is through the eyes of a little boy called Charlie. The films have found an audience as a standalone piece, and have been selected for four film festivals. In 2016 they were screened at the Raw Science Film Festival in Los Angeles and Viten Film Festival in Bergen, Norway and in 2017 they were screened in the New Filmmakers New York 2017 winter showcase and the International Freethought Film Festival in Orlando, Florida.
The English survey and films have been translated into Polish, French, German, Russian, Arabic, Swedish, Icelandic, Portuguese, Italian, Japanese, Mandarin, Spanish and Hindustani Urdu. Social Scientists around the world collaborating on the project have led on the translations, recruitment, data collection and data analysis in the different languages. Wellcome has kindly funded the film making costs for this project, as well as some translations. We also thank those Task Force members who volunteered their time to carry out or validate translations.Download the Your DNA, Your Say dataset here