20,000 international voices share how they want their DNA information used

September 1, 2017, Wellcome Trust Sanger Institute

The Wellcome Genome Campus and Global Alliance for Genomics and Health (GA4GH) have gone global with a project to explore public attitudes and beliefs on the sharing of genetic information. Now available in English, Russian, German, Portuguese and Polish, with French, Icelandic, Arabic, Japanese, Italian, Swedish, Hindustani and Mandarin translations on the way, the film-based survey, called Your DNA Your Say, is on track to gather feedback from more than 20,000 people around the world.

Every day, DNA and are collected at clinics and research labs around the globe. Individuals are asked to give permission for their to be donated for the purposes of research - both non- and for- profit. Such data are sent around the world every second.

Your DNA Your Say is the largest global survey of public opinion on genomics. The results of the survey will feed into the work of GA4GH, including the development of new policies to address the ethical and moral questions - both personal and political - about how we use people's genetic information.

Dr Anna Middleton, Head of Society and Ethics Research at Connecting Science, Wellcome Genome Campus, who leads the project, said: "As we enter a new era of genomic and personalised medicine, a need to understand the public's views on the sharing of has become increasingly urgent. This is a very ambitious project, aiming to gather opinions from across the world - we want everyone to take part. There is a huge global evidence gap on this subject. Since we don't have a clear public voice on the issue, there's a risk of inappropriate policy being made about how data are shared."

The survey targets not just the general public, but also patients, research participants, scientists and health professionals.

Professor Barbara Prainsack, who led the German arm of the study, explores the societal aspects of data use for personalised medicine at King's College London. She said: "We use a series of nine short films to illustrate how people's data could be used in different contexts. We deliberately seek to engage people who may not have thought about these aspects before. How would you want your data to be used, by whom, and on what terms? These questions are relevant for all of us as citizens and patients."

Nadia Kovalevskaya of Repositive, a global portal for genomic research data, helped develop the Russian translation. She said: "We think it is fantastic that this will be available to members of the public in Russia. We know that genomics research is developing fast across the world, so it is important to study attitudes of the global audience towards these developments."

Explore further: Closing the evidence gap on public attitudes toward genetic data handling

More information: surveys.genomethics.org/survey/yourdnayoursay?_=1

Related Stories

Closing the evidence gap on public attitudes toward genetic data handling

May 24, 2016
The Global Alliance for Genomics and Health (GA4GH) and the Wellcome Genome Campus have launched a new project to explore global public attitudes and beliefs around the sharing of genetic information. This has become increasingly ...

GA4GH presents vision, model for genomic and clinical data sharing

June 9, 2016
In today's Science, the Global Alliance for Genomics and Health (GA4GH) calls for a federated data ecosystem for sharing genomic and clinical data. The authorship, which includes Richard Durbin, Julia Wilson, Stephen Keenan, ...

Making the case for global genomic data sharing

November 8, 2016
The scientific community may be overlooking a significant barrier to international collaboration reflected in a series of recent surveys: potential public resistance to sharing of genomic and other health data across national ...

Most people eager to know the secrets of their genetics

April 29, 2015
A survey of nearly 7000 people has revealed that 98 per cent want to be informed if researchers using their genetic data stumble upon indicators of a serious preventable or treatable disease. The study, which comes after ...

Big Data can save lives, says leading cancer expert

May 16, 2016
The sharing of genetic information from millions of cancer patients around the world could be key to revolutionising cancer prevention and care, according to a leading cancer expert from Queen's University Belfast.

People want access to their own genomic data, even when uninterpretable

June 7, 2015
The largest study to date of attitudes towards the use of genomic information shows that the majority of people want access to results from genome sequencing, even if these are not directly related to the condition for which ...

Recommended for you

A centuries-old math equation used to solve a modern-day genetics challenge

January 18, 2018
Researchers developed a new mathematical tool to validate and improve methods used by medical professionals to interpret results from clinical genetic tests. The work was published this month in Genetics in Medicine.

Peers' genes may help friends stay in school, new study finds

January 18, 2018
While there's scientific evidence to suggest that your genes have something to do with how far you'll go in school, new research by a team from Stanford and elsewhere says the DNA of your classmates also plays a role.

Epigenetics study helps focus search for autism risk factors

January 16, 2018
Scientists have long tried to pin down the causes of autism spectrum disorder. Recent studies have expanded the search for genetic links from identifying genes toward epigenetics, the study of factors that control gene expression ...

Group recreates DNA of man who died in 1827 despite having no body to work with

January 16, 2018
An international team of researchers led by a group with deCODE Genetics, a biopharmaceutical company in Iceland, has partly recreated the DNA of a man who died in 1827, despite having no body to take tissue samples from. ...

The surprising role of gene architecture in cell fate decisions

January 16, 2018
Scientists read the code of life—the genome—as a sequence of letters, but now researchers have also started exploring its three-dimensional organisation. In a paper published in Nature Genetics, an interdisciplinary research ...

Study advances gene therapy for glaucoma

January 16, 2018
While testing genes to treat glaucoma by reducing pressure inside the eye, University of Wisconsin-Madison scientists stumbled onto a problem: They had trouble getting efficient gene delivery to the cells that act like drains ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.