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UK Research Funders Adopt Recommendations to Prevent ID of Genetic Study Subjects

NEW YORK (GenomeWeb News) — A group of UK-based research funding organizations said this week that they will adopt recommendations made by an expert advisory group to reduce the risk of anonymized individual research subjects in the UK being re-identified from genomic, epidemiological, and social science data.

Cancer Research UK, the Economic and Social Research Council, the Medical Research Council, and the Wellcome Trust have issued a joint response to a statement provided in October by the Expert Advisory Group on Data Access (EAGDA), a group of experts established by these four funders to provide strategic advice on emerging scientific, ethical, and legal issues relating to data access.

The issue of re-identification came to the forefront after a study published in Science in January 2013 demonstrated that it was possible to deduce the identities of participants in public sequencing projects from de-identified genetic material.

As reported by BioInform, the researchers behind the Science study showed that it was possible to use genetic and demographic information that is freely available from publicly accessible internet resources to identify participants in the 1000 Genomes Project.

In its October statement, the EAGDA noted that "although the data in a genomic dataset may be fully anonymized in the conventional sense, cross-linking with general demographic data that are available from elsewhere makes it technically possible in some circumstances to triangulate the identities of individual research participants. Large datasets, particularly those including extensive genomic information, cannot be completely safe from inferential exploitation, including subject re-identification. 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 also made a number of recommendations to reduce this risk, and these have been adopted in full by the four funding organizations, according to a recently issued joint statement from the entities.

Specific recommendations 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 offense, such as a withdrawal of funding, if researchers deliberately attempt to re-identify individuals from anonymized data.

The UK funding organizations have committed to ensuring that both the EAGDA statement and their response are clearly communicated to their funded communities and are incorporated where appropriate into relevant guidance for studies. The principles and sanctions will be incorporated into their respective existing policies on research misconduct.

"We accept the recommendations made by EAGDA to manage the potential risks and will set about implementing them into our funding policies and communicating this to the research community," Jeremy Farrar, director of the Wellcome Trust, said in a statement. "Whilst it is impossible to eliminate entirely the risk of re-identification of individuals, it is possible to minimize this risk with proportionate safeguards. We believe that a deliberate attempt to re-identify individuals should be viewed as malpractice and be met with appropriate sanctions."