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 professional societies.

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 first workshops on the use of consent forms and anonymisation strategies were held in March 2008 in Colchester and Leeds, which a number of university REC members attended.

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 forms.

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.