Anonymity cannot be guaranteed, but the risks are manageable

As new guidelines on genomic data are released, Katherine Littler of the Wellcome Trust outlines how research funders hope to balance access to data with privacy.

The pace of genomics research has surely owed much to the field’s strong traditions of open data. But, when people are concerned, this creates a difficult balance between maximising access to data while protecting privacy and confidentiality. As techniques for analysing genomic data and linking between datasets advance rapidly, the guarantee of anonymity for participants is increasingly being questioned.

A paper published in Science in 2013 brought this issue to the fore for genomics research. US researchers described a method for identifying participants in the 1,000 Genomes Project that involved combining open-access genomic datasets with a range of other publicly available information, ranging from census and administrative data to genealogy databases linking surnames with particular markers on the Y-chromosome.