Protecting research participants’ confidentiality

<div>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.</div><div>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.</div><div>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. </div><div>The funders issued a joint response, accepting its recommendations and identifying how they could coordinate actions to reduce risks to confidentiality.</div><div><br></div><div><br></div><div><div>EAGDA supports cohort studies and their Data Access Committees (DACs) by promoting good working practices, consistent governance and transparent decision making.</div><div>It also wants to increase UK input into international policy discussions on data access.</div><div>EAGDA is a partnership between:</div><div>Wellcome, Cancer Research UK, the Economic and Social Research Council and the Medical Research Council</div></div>