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.

EAGDA supports cohort studies and their Data Access Committees (DACs) by promoting good working practices, consistent governance and transparent decision making.
It also wants to increase UK input into international policy discussions on data access.
EAGDA is a partnership between:
Wellcome, Cancer Research UK, the Economic and Social Research Council and the Medical Research Council