Consent to data archiving or data sharing
Data archiving is a priority for many funders as a means of ensuring that maximum use is made of any data collected, based on the principle that ‘publicly funded research data should be openly available to the scientific community to the maximum extent possible’ (ESRC Data Policy, 2000). The ESRC stipulates that all grant holders are required to offer their computer-readable data for deposit, prepared to a standard which may be used by a third party, within three months of the end of the grant.
But, data archiving creates a tension for ethical research practice. Arguably, if data are to be made available to third party researchers, participants can’t know what their data might be used for in future, and so can’t give their fully informed consent. However, data archiving can also be seen as ethical practice – because it aims to ensure that new data collection is only carried out when truly necessary, by making best use of existing data, in order to avoid unnecessarily wasting the time of research participants in future.
The ethics questions raised by data archiving are discussed in depth in a guide to data sharing produced by the ESRC’s UK Data Archive (UKDA). This guidance directly addresses the tensions between data archiving and data protection, and the problems that some researchers have reported in securing Research Ethics Committee permission to archive data (follow this link for details). It also includes useful guidance on what to include in your consent form, and descriptions of their procedures that you can use in your ethics application. The key points can be summarised as follows:
The UK Data Archive ensures that all research data are used only in appropriate and ethical ways, and that research participants are protected and personal data safeguarded in accordance with the Data Protection Act.
Archived data are typically anonymised, unless specific consent has been given for personal information to be included. Archived data are not in the public domain but their use is restricted for specific purposes after user registration (which is subject to certain conditions, such as not using data for commercial purposes, not identifying any potentially identifiable individuals and not sharing data with unregistered users). For confidential or other sensitive data, stricter access regulations are imposed.
The guidance notes that there are tensions or confusions between data protection and data sharing, and in relation to the requirements of the Data Protection Act. In particular, it notes that the Data Protection Act applies only to personal data, and that once data have been anonymised, the Act no longer applies.
In practice, in terms of consent, the key issue is that your participants have to be aware of what data archiving means – in terms of the storage and anonymisation of their data, and the regulation of access to their data – and they have to agree to not knowing how those data might be used in future.
