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

Times Higher Education free 30-day trial

You've reached your article limit

Register to continue

Registration is free and only takes a moment. Once registered you can read a total of 3 articles each month, plus:

  • Sign up for the editor's highlights
  • Receive World University Rankings news first
  • Get job alerts, shortlist jobs and save job searches
  • Participate in reader discussions and post comments
Register

Have your say

Log in or register to post comments

Most Commented

Laurel and Hardy sawing a plank of wood

Working with other academics can be tricky so follow some key rules, say Kevin O'Gorman and Robert MacIntosh

Lady Margaret Hall, Oxford will host a homeopathy conference next month

Charity says Lady Margaret Hall, Oxford is ‘naive’ to hire out its premises for event

women leapfrog. Vintage

Robert MacIntosh and Kevin O’Gorman offer advice on climbing the career ladder

Woman pulling blind down over an eye
Liz Morrish reflects on why she chose to tackle the failings of the neoliberal academy from the outside
White cliffs of Dover

From Australia to Singapore, David Matthews and John Elmes weigh the pros and cons of likely destinations