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 starts an important and on-going 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.