24th May 2016

Your DNA, Your Say: global survey on online health data and sharing

Your DNA Your Say is an ambitious, global research project in the form of a ‘film-survey’ experience gathering the views of people around the world on online health data and how it might be used by others.

The survey works like this: a series of short films introduces participants to the practical and ethical issues of DNA and medical data sharing, followed by a survey in which participants are asked to provide their views on whether they would donate their data, for what purpose, and whether they perceive any harms associated with the act of donating.

Introduction to the Your DNA, Your Say survey

Dr. Anna Middleton, Head of Connecting Science’s Society and Ethics Research at the Wellcome Genome Campus, who leads the project, said: “There is a huge evidence gap for us globally. At the moment there’s a risk of policy being made about how data are shared without having a clear public voice on the issue.”

Every day, DNA and medical data are collected at clinics and research labs around the globe. To be truly informative, all of the data points — and there are millions per person — must be integrated into larger repositories in order to facilitate comparison across millions of individuals. Doing so requires individuals to give permission for their DNA and medical data to be donated for the purposes of research. Such sharing will often mean data leave the institutions where they were collected, and travel across the Internet to researchers around the world. Policy on this process must be informed by the views and preferences of people to whom the data originally belonged.

We’re not only asking the general public, but also patients, research participants, scientists, health professionals, young people, old people. We want everyone to take part. All of us have an online footprint of one sort or another and most of us engage with healthcare services. Our health data is online too and it is very useful for research - are we OK with it being used in all sorts of ways by other people? Our survey aims to find out

Anna Middleton

The project was led by Anna Middleton on behalf of the Participant Values Task Team for the Global Alliance for Genomics and Health (GA4GH). GA4GH is an international community of researchers, clinicians, regulators, software developers, members of industry and government, as well as patient advocates and others who are all committed to the responsible sharing of genomic and health-related data. The results of the survey will feed back into GA4GH and its work.

Since GA4GH is a global organisation, it is important that this work is accessible around the world. The first rollout of the survey was in English, and it and the accompanying videos are being translated into several other languages, including French, Polish, Japanese, Arabic, Russian, and Norwegian. Translating them is important to be able to learn what different communities think and ensuring that we are able to facilitate responsible data sharing.

The Your DNA Your Say films were selected to be shown at:
  • Viten Film Festival 2016 (Norway)
  • RAW Science Film Festival 2016 (USA)

Be part of the conversation, watch our films and tell us your perspective at www.YourDNAYourSay.org