My DNA, my data: British people would want to know if they have genes linked to diseases

By Gareth Macdonald contact

- Last updated on GMT

My DNA, My data: Brits would want disease-related genomic info say researchers
My DNA, My data: Brits would want disease-related genomic info say researchers

Related tags: Genetics

Most Brits would want to know if they carry genes linked to life-threatening diseases according to UK researchers who say this could have implications for drug development.

The finding is from a UK Department of Health (DoH) and Wellcome Trust Funded survey that quizzed nearly 7,000 people about access to personal genetic information.

The researchers found that 98% of respondents said they would want access to their genomic data if it related to potential diseases, even if the risk was relatively low.

Lead researcher Anna Middleton told “We asked about levels of risk and whether people wanted information related to serious, treatable conditions even if the risk of them occurring was low, and we found that participants were still very interested in low-risk data – what was key to them was that it was useful information​.”

The results follow just a month after DoH-owned firm Genomics England announced its intention to sequence the genomes of 100,000 British people by 2017 to bolster the National Health Service’s diagnostics capabilities and identify patients with rare diseases.

The other part of Genomics England’s plan is to share genomic data with patients, which is something people would want based on the results of the Wellcome Trust survey.

Dr Middleton told us: “People wanted access to their genomic data for several reasons, the most important being that they perceived it had value to them in informing their future health.

They were most interested in knowing about genes related to serious, life-threatening conditions where preventative steps were available to them or treatments available for the condition​.”

Genomic drug development

The availability of detailed genomic information is core to personalised medicine as it enables the drug industry to develop bespoke treatments.

Similarly, genomic data could be used to identify patients likely to respond better to treatments, as is the case with Roche’s breast cancer drug Herceptin (trastuzumab).

And, while such issues were not the core focus of the survey, Middleton was open to the suggestion that a desire for knowledge about potential future diseases may indicate a willingness to share such information with drugmakers to aid treatment development.

We didn’t ask about the engagement with drug makers, but certainly the overwhelming message was that people felt genomic data would be useful to them in some way and so a natural extrapolation could be that they would be positive about engaging with drug makers to support the development of treatments​.”

She added that the group plans another survey​ focused on people’s willingness to share their genomic data with third parties.

Source: European Journal Human Genetics.

Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.

Middleton, A et al. (2015).


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