Most people want access to their genomic data


Most people want access to their own genomic data even if it doesn’t tell them anything useful about their future health, a large study finds.

The survey of over 7,000 people from 75 countries found that 98% of participants wanted to know about genes linked to treatable conditions that were serious or life-threatening.

But 59% of respondents were interested in having access to their own raw data, even though, on its own, it would tell them nothing useful about their future health.

They felt the genomic information simply ‘belonged to them’ and they should be able to have access to it, even if the reality was that they would do nothing with it,” said lead author Dr Anna Middleton a scientist at the Wellcome Trust Sanger Institute, Cambridge, UK.

“It would now be very helpful to explore the value that people put on genomic data. For example, would they pay for an interpretation and, if so, how much?” said Dr Middleton who presented her findings at the European Society of Human Genetics.

“Creating clinical-grade health information in a research setting requires funding, resources, and strong clinical connections to the health professionals who will deliver it, explain it, and follow up the patient,” she said.

 

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