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

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.

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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

THEME
CATEGORY
TYPE
STATUS
Work Stream
Product Leads
  • Richard Milne
  • Anna Middleton
Staff Contact

Community resources

Dive deeper into this product! The “Your DNA, Your Say” initiative explores how people around the world feel about the collection, use, and sharing of genetic and health data for research. The project features an online survey that gauged global public attitudes towards genomic data sharing and identified factors that encourage or discourage sharing. The survey and accompanying videos have been translated into 14 languages and distributed across the globe. To date, the team has received responses from 35,000 people worldwide from 22 countries. Ongoing work aims to translate these insights into approaches that can equitably increase the overall volume and diversity of genomic data. The findings from the survey help ensure that GA4GH policies and tools are informed by the people they are ultimately designed to serve.


Don't see your name? Get in touch:

  • Qasim Ayub
    Monash University Malaysia
  • Yosr Hamdi
    Institut Pasteur de Tunis
  • Anna Middleton
    Wellcome Connecting Science, Wellcome Genome Campus
  • Richard Milne
    Wellcome Connecting Science, Wellcome Genome Campus
  • Jamal Nasir
    University of Northampton
  • Emilia Niemiec
    Lunds Universitet
  • Christine Patch
    Wellcome Connecting Science, Wellcome Genome Campus
  • Barbara Prainsack
    University of Vienna
  • Swayamsiddha Sahoo
    Institute of Resource Development and Social Management
  • Sikha Singh
    Association of Public Health Laboratories
  • Adrian Thorogood
    Terry Fox Research Institute
  • Danya Vears
    Murdoch Children's Research Institute

News, events, and more

Catch up with all news and articles associated with Your DNA, Your Say (Participant Values Survey).

8 Jul 2021
GA4GH standards in a global learning health system
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18 Sep 2020
Future of genomic research at risk without greater public trust in how genetic data is shared, survey finds
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30 Sep 2019
Your DNA, Your Say publishes study on trust in english-speaking populations
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