The latest report from the PHG Foundation, commissioned by Genomics England, examines the legal and ethical implications of an online platform for patient engagement in precision medicine research being developed by Sano Genetics.
In May 2020, Genomics England announced that it was collaborating with precision medicine research start-up Sano Genetics and data management firm Zetta Genomics to develop a platform that would allow rare disease patients and their caregivers to add vital additional information about their health and wellbeing to research databases.The platform, which is being funded through a grant from Innovate UK, is being designed to add a vital layer of patient-derived information to the ground-breaking research being carried out through Genomics England.
The platform will lay the groundwork for better capturing additional data directly from patients and their families to learn about disease progression and treatment effectiveness from their perspective. Collecting information about health and wellbeing directly from patients will help fill in the blanks between infrequent doctor visits.
In addition to a separate internal assessment being carried out by Genomics England, the PHG Foundation report has assessed the impact of the platform’s features and applications on patients. It has found that the system potentially offers opportunities to enrich existing datasets, such as those held within Genomics England’s National Genomic Research Library, and will also help enhance engagement with patients undergoing treatment.
The report recommends support for patients who may be less digitally literate and includes considerations for policymakers. It also suggests that clarity, personalisation and engagement with patients could provide a blueprint for realising the promise of the technology, while minimising potential harm.