Feeds

Research bods told: Try to ID anonymised data subjects? No more CASH for you

Four mega UK funders make joint statement

Security for virtualized datacentres

Medical research funding bodies in the UK may withdraw support for projects where researchers attempt to work out the identity of individuals behind anonymised data without the subjects' permission.

Cancer Research UK, the Economic and Social Research Council, the Medical Research Council and the Wellcome Trust said funding withdrawals are one possible sanction they could deploy against researchers "who deliberately attempt to re-identify individuals without their consent".

The research funders set up an expert group (EAGDA) to advise them on scientific, ethical and legal issues around data access and have announced that they have accepted the recommendations made by that group.

"[The recommendations by EAGDA] include: assessing and regularly reviewing the risk of re-identification through linking with other data; explaining the risk to participants when obtaining consent for studies; controlling access to data that could potentially identify individuals; and including sanctions that are proportionate to the nature of the offence, such as a withdrawal of funding, if researchers deliberately attempt to re-identify individuals from anonymised data," a joint statement issued by the four funding bodies said.

The organisations said that they will now take steps to implement the recommendations within their funding policies.

"Whilst it is impossible to eliminate entirely the risk of re-identification of individuals, it is possible to minimise this risk with proportionate safeguards," Dr Jeremy Farrar, director of the Wellcome Trust said. "We believe that a deliberate attempt to re-identify individuals should be viewed as malpractice and be met with appropriate sanctions."

Sir John Savill, chief executive of the Medical Research Council, added: "It's important that we protect the interests and anonymity of individuals while enabling research that benefits all society. As funders, we are committed to working together to reduce the risk of re-identification in a way that does not block valuable research to advance social and medical science and improve health."

EAGDA had previously noted that it was "technically possible" to re-identify individuals whose data is being used as part of the 1000 Genomes project, which involves the sequencing of human DNA code for research purposes. This is because data included in the project, although anonymised, could be matched with "general demographic data that are available from elsewhere" and analysed so as to reveal the identity of individuals behind the data in some circumstances, it said.

"Although the likelihood of such re-identification may currently be low for most types of study, it is likely to increase in the future," EAGDA said.

Copyright © 2014, Out-Law.com

Out-Law.com is part of international law firm Pinsent Masons.

Security for virtualized datacentres

More from The Register

next story
Boffins who stare at goats: I do believe they’re SHRINKING
Alpine chamois being squashed by global warming
What's that STINK? Rosetta probe shoves nose under comet's tail
Rotten eggs, horse dung and almonds – yuck
Comet Siding Spring revealed as flying molehill
Hiding from this space pimple isn't going to do humanity's reputation any good
Kip Thorne explains how he created the black hole for Interstellar
Movie special effects project spawns academic papers on gravitational lensing
Experts brand LOHAN's squeaky-clean box
Phytosanitary treatment renders Vulture 2 crate fit for export
LONG ARM of the SAUR: Brachially gifted dino bone conundrum solved
Deinocheirus mirificus was a bit of a knuckle dragger
Moment of truth for LOHAN's servos: Our US allies are poised for final test flight
Will Vulture 2 freeze at altitude? Edge Research Lab to find out
prev story

Whitepapers

Why cloud backup?
Combining the latest advancements in disk-based backup with secure, integrated, cloud technologies offer organizations fast and assured recovery of their critical enterprise data.
A strategic approach to identity relationship management
ForgeRock commissioned Forrester to evaluate companies’ IAM practices and requirements when it comes to customer-facing scenarios versus employee-facing ones.
Security for virtualized datacentres
Legacy security solutions are inefficient due to the architectural differences between physical and virtual environments.
Reg Reader Research: SaaS based Email and Office Productivity Tools
Read this Reg reader report which provides advice and guidance for SMBs towards the use of SaaS based email and Office productivity tools.
New hybrid storage solutions
Tackling data challenges through emerging hybrid storage solutions that enable optimum database performance whilst managing costs and increasingly large data stores.