Feeds

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

Four mega UK funders make joint statement

Boost IT visibility and business value

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.

Gartner critical capabilities for enterprise endpoint backup

More from The Register

next story
LOHAN packs bags for SPACEPORT AMERICA!
Spanish launch goes titsup, we're off to the US of A
Gigantic toothless 'DRAGONS' dominated Earth's early skies
Gummy pterosaurs outlived toothy competitors
'Leccy racer whacks petrols in Oz race
ELMOFO rakes in two wins in sanctioned race
Boffins ID freakish spine-smothered prehistoric critter: The CLAW gave it away
Bizarre-looking creature actually related to velvet worms
CRR-CRRRK, beep, beep: Mars space truck backs out of slippery sand trap
Curiosity finds new drilling target after course correction
Astronomers scramble for obs on new comet
Amateur gets fifth confirmed discovery
Boffins build CYBORG-MOTHRA but not for evil: For search & rescue
This tiny bio-bot will chew through your clothes then save your life
Vulture 2 takes a battering in 100km/h test run
Still in one piece, but we're going to need MORE POWER
What does a flashmob of 1,024 robots look like? Just like this
Sorry, Harvard, did you say kilobots or KILLER BOTS?
prev story

Whitepapers

Implementing global e-invoicing with guaranteed legal certainty
Explaining the role local tax compliance plays in successful supply chain management and e-business and how leading global brands are addressing this.
7 Elements of Radically Simple OS Migration
Avoid the typical headaches of OS migration during your next project by learning about 7 elements of radically simple OS migration.
BYOD's dark side: Data protection
An endpoint data protection solution that adds value to the user and the organization so it can protect itself from data loss as well as leverage corporate data.
Consolidation: The Foundation for IT Business Transformation
In this whitepaper learn how effective consolidation of IT and business resources can enable multiple, meaningful business benefits.
High Performance for All
While HPC is not new, it has traditionally been seen as a specialist area – is it now geared up to meet more mainstream requirements?