The future of precision medicine part 7: public engagement

The developments of the information age that have enabled the development of precision medicine have also led to the empowerment of patients, who are now, via the internet, able to access general medical information and cutting-edge research on their conditions in a way that would have been previously impossible even to imagine.

This has led to the emergence of communities of expert patients who play an active role as patient advocates, repositories of advice and support for fellow patients, a resource for clinicians and researchers, and actively participate in the direction and decision-making in respect of their own treatment.

In juxtaposition and by contrast to how greater availability of information empowers some groups of patients, the increased technical complexity of genomic and precision medicine approaches and the sheer amount of information available present a challenge for the majority of patients, particularly those without any scientific or medical training.

Added to the already heavy emotional burden of living with disease, the information overload involved in trying to grapple intellectually with its science can be overwhelming.

This is particularly the case given the variable quality and accuracy of information available from different sources, and the unfortunate proliferation of “fake news” and fabricated tales of the effectiveness of “alternative” therapies in preference to science-based medicine (eg, the Belle Gibson scandal).

Despite the rising popularity of direct-to-consumer genetic testing kits and services and the explosion in research in the field of precision and personalised medicine, including the UK-based 100,000 Genomes Project and the USA’s All of Us research programme, a recent online survey conducted by GenomeWeb and the Personalized Medicine Coalition found that awareness of genetics and personalised medicine among 1,001 adults representative of the US population was low.