Your DNA, Your Say (Participant Values Survey)

Explores how people around the world feel about the collection, use, and sharing of genetic and health data for research

Overview

Summary Benefits Target users

Developed by the GA4GH Regulatory & Ethics Work Stream (REWS), the “Your DNA, Your Say” initiative explores how people around the world feel about collecting, using, and sharing genetic and health data for research. A survey that received responses from 35,000 people so far found factors that encourage or discourage genomic data sharing. The survey findings help ensure GA4GH policies and tools reflect the people they ultimately serve.

Benefits

Understand public sentiment around genetics and data sharing to better inform policy
Survey and videos have been translated into 14 languages and distributed globally

Target users

Research participants & patient communities, and public

Publications Documents Videos

Publications

Title	Author(s)	Year
Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia	Milne, R. et al. Milne, R., Morley, K.I., Howard, H., Niemiec, E., Nicol, D., Critchley, C., Prainsack, B., Vears, D., Smith, J., Steed, C., Bevan, P., Atutornu, J., Farley, L., Goodhand, P., Thorogood, A., Kleiderman,E., Middleton, A.	2019
Your DNA, Your Say	Middleton, A. Middleton, A.	2017

Documents

Date	Title
14 September 2023	Code of Ethics and Community Conduct (CECC)
31 August 2022	Infographic: Your DNA Your Say — trust and trustworthiness

Videos

	Date	Title
	9 October 2018	GA4GH 6th Plenary "Going Global": right to benefit — Your DNA, Your Say (Anna Middleton)
	16 November 2017	GA4GH 5th Plenary: Your DNA, Your Say (Anna Middleton)