Duty to share data

March 6, 2014

After carefully reviewing the issue of sharing personal data, Dame Fiona Caldicott concluded: “The duty to share information can be as important as the duty to protect patient confidentiality.” The amendments to the EU General Data Protection Regulation could result in groundbreaking UK research that uses routine data, consented biobanks, registries or cohorts becoming illegal or unworkable.

In a letter, David Booth (“The ethics of big data”, 20 February) accuses the Medical Research Council of promoting the theft of personal health data when we advocate the benefits to all of studying “safe data in safe havens”. Such MRC-funded research will require approval by a research ethics committee; the use of rigorously de-identified data in an approved research environment with robust technical and security standards; a full audit trail of data use; and privacy impact assessment of results – all underpinned by responsible leadership by accredited researchers. Patients – and society as a whole – will benefit from medical progress driven by data sharing provided that certain amendments to the EU General Data Protection Regulation are rejected.

Sir John Savill
Chief executive officer
Medical Research Council

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