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The ethical and legal framework for a Genomics England and Sano Genetics participant engagement platformReportA commissioned report for Genomics England
Citizen generated data and health: predictive prevention of diseaseReportAn in-depth examination of the prospects for using citizen generated data for health, and specifically to support predictive prevention of disease and to keep people healthier, longer
The GDPR and genomic dataReportThe Information Commissioner’s Office awarded the PHG Foundation a research grant to investigate how the GDPR impacts upon the field of genomics
Identification and genomic dataReportGenomic data does not sit comfortably within the current legal and regulatory framework as a consequence of its nature and an overall lack of regulatory coherence. We explain the complex debate and regulatory issues
Linking and sharing routine health data for researchReportThe recommendations are drawn from a series of interviews with experienced data users on the complex issues of using de-identified data, the barriers and the ways to improve data sharing for research.
Data sharing to support UK clinical genetics and genomics servicesReportOur recommendations for responsible and proportionate sharing of data for patient benefit
Familial informationResearchAs co-leaders of work package 2 of the PROPHET project, we have recently completed a scoping review to establish identified biomarkers suitable for the use in the prevention of common diseases.
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