Research bods told: Try to ID anonymised data subjects? No more CASH for you
Four mega UK funders make joint statement
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.
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