A vast majority of people around the world would like to be told if their genetic data indicates serious preventable or treatable disease, research has shown.

Findings from a global survey of 7,000 people revealed that 98 per cent would like to be inform­ed of the bad news if researchers stumble across it while examining their DNA. But genetic scientists and health professionals questioned were worried about returning data that could not yet be interpreted accurately.

The study follows the launch of the 100,000 Genomes Project which aims to map 100,000 complete genetic codes of NHS patients by 2017, focusing on those with rare inherited diseases and cancer.

Anna Middleton, from the Wellcome Trust Sanger Institute in Hinxton, Cambridgeshire, who led the survey published in the European Journal Human Genetics, said: “The advent of fast, efficient genetic sequencing has transformed medical research over the past decade and it’s set to revolutionise clinical care in the future.

The study represents a first step in informing people

“Policy surrounding the use of genetic data in research and clinical settings must be directed by the views and experiences of the public, patients, clinicians, genetic health professionals and genomic researchers. This study represents a first step in informing people of the issues and gathering their responses.”

The research, conducted in 75 countries around the world, involved polling members of the public, health professionals and genetic scientists.

A majority of participants wanted to receive information about serious conditions even if the risk of developing the illness was as low as 1 per cent. But not so many of them wanted to know about more minor conditions.

Co-author Alastair Kent, director of the charity Genetic Alliance UK, said: “When we asked patients and families how much they want to know about their genetic information, their immediate reaction was that whatever information the researchers or clinicians found out, they wanted to know too.

“But there can be no one size fits all. We need to make sure that there is enough information and support available to allow individuals to make an informed choice about what is right for their situation. We need to remember this information belongs to the individual and they should be able to decide for themselves what they do and don’t find out about their health − which means we need to start thinking about how this can be recognised.”

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