The preservation and protection of anonymity is a central concern for people donating personal information and biological samples to research. The issue of choice is also critical. What if we don't want to put health information that is inextricably linked to our identities at risk on a national database? Should we choose to opt-in to a scheme to share their health information, or should our records be used automatically unless we opt out?   

Similar concerns revolve around the National DNA Database (NDNAD), set up in 1995 as a repository for forensic data to help police solve crimes. At present it holds only DNA taken from crime scenes and from individuals in police custody. However, there is public concern that the database may one day be extended to become a universal repository of everyone's DNA, and that this might infringe our fundamental rights to privacy. In such a scenario police could learn more about our health status and family relationships (whether we are biologically related to our fathers, for instance) than we know ourselves.

Another key question is whether samples taken from individuals in police custody - in many cases involuntarily - could or should be linked to databases containing biological samples from volunteers for biomedical research.

In November 2008, the Trust's response to the HGC's consultation on The Forensic Use of DNA and the National DNA Database [PDF] strongly opposed any move to link the NDNAD with research databases. The response stated this could irrevocably damage public confidence in research. It also recommended the establishment of an independent body to oversee the resource, citing the UK Biobank Ethics and Governance Council as a possible model.