A European Journal Human Genetics survey of nearly 7,000 people from 75 countries has revealed that 98% 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 the U.K. government’s announcement that Genomics England will sequence 100,000 genomes by 2017, begins an important and ongoing conversation about how our genomic data is used.
The results show that genomic data has a perceived value to participants even if it is not currently clear what the information means for health outcomes. However, in general, the majority of people were interested in clinically actionable data and genetic professionals surveyed were concerned about returning data that cannot yet be interpreted accurately.
“The advent of fast, efficient genetic sequencing has transformed medical research over the past decade and it’s set to revolutionize clinical care in the future,” says Anna Middleton, Ph.D., first author from the Wellcome Trust Sanger Institute. “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 professions, and genomic researchers. This study represents a first step in informing people of the issues and gathering their responses.”
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