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

September 1, 2017

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 math concept from the engineering world points to a way of making massive transcriptome studies more efficient

November 17, 2017
To most people, data compression refers to shrinking existing data—say from a song or picture's raw digital recording—by removing some data, but not so much as to render it unrecognizable (think MP3 or JPEG files). Now, ...

US scientists try first gene editing in the body

November 15, 2017
Scientists for the first time have tried editing a gene inside the body in a bold attempt to permanently change a person's DNA to try to cure a disease.

Genetic mutation in extended Amish family in Indiana protects against aging and increases longevity (Update)

November 15, 2017
The first genetic mutation that appears to protect against multiple aspects of biological aging in humans has been discovered in an extended family of Old Order Amish living in the vicinity of Berne, Indiana, report Northwestern ...

Genetic variant prompts cells to store fat, fueling obesity

November 13, 2017
Obesity is often attributed to a simple equation: People are eating too much and exercising too little. But evidence is growing that at least some of the weight gain that plagues modern humans is predetermined. New research ...

Discovering a protein's role in gene expression

November 10, 2017
Northwestern Medicine scientists have discovered that a protein called BRWD2/PHIP binds to histone lysine 4 (H3K4) methylation—a key molecular event that influences gene expression—and demonstrated that it does so via ...

Twin study finds genetics affects where children look, shaping mental development

November 9, 2017
A new study co-led by Indiana University that tracked the eye movement of twins finds that genetics plays a strong role in how people attend to their environment.

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.