Protecting research participants’ confidentiality

Research participants are often given a guarantee that the data they provide will not be traceable back to them. But as technology develops it may be possible to use data from different sources to piece together a person’s identity.

In 2013, a method for doing this using genomic data was developed. It only worked in a specific set of circumstances, but it proved that re-identification from genomic data could be technically possible.

In response, EAGDA examined the risk of re-identification for participants in genomic studies in the UK. It then issued a statement highlighting how funders can ensure the confidentiality of research participants.

The funders issued a joint response, accepting its recommendations and identifying how they could coordinate actions to reduce risks to confidentiality.