How much do I want the police to know about me?
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.