Genomics platform offers “unprecedented” opportunities – think tank



A new platform to support population-scale genomics research offers “unprecedented opportunities to enrich existing datasets”, according to research commissioned by Genomics England. 

Think tank PHG Foundation was commissioned to explore the legal and ethical implications of a novel participant engagement technology platform being developed by Cambridge tech start-up Sano Genetics.

Developed with funding from Innovate UK and built in collaboration with data management company Zetta Genomics and Genomics England, the online platform is designed to increase active involvement in large-scale, long-term health research.

Precision medicine research has historically suffered from recruitment headaches, costly delays and sky-high dropout rates.

This is largely due to a lack of signposting and a poor participant experience, but also because of sizeable barriers that prevent people from taking part, such as proximity to hospitals and testing centres and understandable concerns around how sensitive data will be used.

The new platform, which matchmakes participants with research, is aimed at significantly speeding up the development of new medicines and dramatically improving the experience of taking part in groundbreaking research.

Such platforms are a relatively new concept and those in existence around the world vary considerably so there has, until now, been no significant literature on the ethical and legal implications of their features and applications.

This report, which follows a separate internal assessment by Genomics England, can be read here.

It says the platform potentially offers unprecedented opportunities to enrich existing datasets, such as those held within the National Genomic Research Library and, in the process, build engagement with those already undergoing treatment.

It recommends provisions for groups who are less digitally literate, and includes considerations for future policy makers.

It suggests the themes of clarity, personalisation and engagement, could provide a blueprint for realising the promise of this technology whilst minimising potential associated harms.

CEO and co-founder of Sano Genetics, Dr Patrick Short, says:In the world of precision medicine research, the participant, once they’ve contributed their data, often gets very little direct benefit.

“There has long been little to no incentive, and plenty of hassle, to take part in a study that might change the state of play for sufferers of a chronic or rare disease in 10 to 15 years’ time. That’s just an unacceptably long timeframe for improving lives.

“A thoughtfully designed participant engagement platform that offers users total transparency around how their data is used, coupled with a superb user experience, is long overdue but it’s critical that we get the framework right the first time so it’s right that it be subjected to rigorous external scrutiny by independent bodies, especially in the development phase.

“The PHG Foundation’s assessment of the legality and ethics of what we’re doing provides us with a robust blueprint that will be fundamental in our ongoing product development.”

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