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Most want DNA testing for disease

Most want DNA testing for disease
Photo: Most want DNA testing for disease
Most people polled in 75 countries say they would like to be told if their DNA indicated they could develop a serious preventable or treatable disease.

Many people around the world would like to be told if their genetic data indicates serious preventable or treatable disease.

Findings from a global survey of 7000 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 the United Kingdom's NHS patients by 2017, focusing on those with rare inherited diseases and cancer.
"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," said Dr Anna Middleton, from the Britain's Wellcome Trust Sanger Institute, who led the survey published in the European Journal Human Genetics.

"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.

Genetic health professionals were five times more likely than other groups to think that "incidental" findings from DNA analysis with potential clinical importance should not be shared.

Dr Helen Firth, another member of the research team from Addenbrooke's Hospital, Cambridge, said: "There are still so many unknowns; having key indicators for a disease in your genetic code may not necessarily mean that you will develop that disease.

"Much of the information in our personal genetic codes is currently uninterpretable and of uncertain clinical significance.

"It will take many years of research before we know how to use much of this data for clinical benefit.

"As this knowledge is gained, our survey will help researchers and health policy makers to plan accordingly."


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