In the spotlight - drive to promote data sharing
Article dated: 19 March 2008
In a drive to promote data sharing, UK Data Archive contacted research ethics committees (RECs)
within UK universities in January 2008 to highlight the tensions between data protection
on the one hand and data sharing on the other.
The UK Data Archive works to administer data sharing policies of various UK research funders,
especially that of the ESRC, while newly formed RECs within universities are seeking to
prevent potential misuse of personal information as undertaken by research with
human subjects. Although the need to protect personal data and preserve confidentiality
(where explicitly required) cannot be overstated, the UK Data Archive is increasingly concerned
about the number of research projects maintaining that they are unable to share data
due to a lack of agreed consent.
As the designated national centre for preservation and dissemination of
these data, one of the roles of the UK Data Archive is to provide guidance to
researchers on data creation strategies and management, particularly in
the key area of informed consent. Researchers are also guided by the
Research Ethics Guidelines provided by their institutions or by
The UK Data Archive is keen to work with university RECs to
review their guidelines and ensure that they are clear in notifying
researchers about their obligations with respect to data sharing.
Most research funders are increasingly keen on maximising the potential
use of primary data created in the course of publicly funded research.
The ESRC, for example, contractually requires all its award holders to
make any research outputs resulting from the award accessible to others,
and offer any resulting data for archiving and sharing, with such materials
being prepared accordingly.
This needs to be taken into account when
designing consent forms. Consent forms should not prohibit sharing,
archiving and re-use of data once confidentiality (by removing identifiers
and personal data) has been assured. Indeed, consent forms may point
out the strategies used by researchers to ensure appropriate
confidentiality and how data will be used and stored.
UKDA can help RECs to provide explicit guidance notes. This may simply
take the form of an additional paragraph within existing guidelines
alerting researchers to the contractual obligations of funding agencies to
share data with other researchers.
The UK Data Archive is currently revising its
guidance on consent and confidentiality and
is hosting a series of training workshops on this topic. The
on the use of consent forms and anonymisation strategies were held in
March 2008 in Colchester and Leeds, which a number of university REC
UK Data Archive staff also met with the Head of the
National Health Service (NHS) Research Ethics Service which oversees the
process of Medical Research Ethics applications and evaluation by RECs to
discuss how guidance might be provided to help those completing ethics
The UK Data Archive is happy to run other training workshops, and equally would
welcome any further thoughts, comments and suggestions from the
community for how it might take this forward constructively.