Your DNA, Your Say
What is the issue?
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.
How are we helping?
The 'Your DNA, Your Say' project is a global online survey gathering public attitudes towards genomic data sharing. The survey contains nine innovative films that explain what genomic data sharing is through the eyes of a little boy called Charlie.
The individual survey items were created by Anna Middleton (Head of Social Science and Ethics Research, Wellcome Connecting Science), 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 English survey and films have been translated into Polish, French, German, Russian, Arabic, Swedish, Icelandic, Portuguese, Italian, Japanese, Mandarin, Spanish and Hindustani, Twi and Ewe. Social Scientists around the world collaborating on the project have led on the translations, recruitment, data collection and data analysis in the different languages.
The team at RAND Europe, led by Kate Morley, are providing support to the project in terms of design and implementation of the analysis of survey data and reporting results in scientific papers.