CREATE & MANAGE DATA
CONSENT & ETHICS
ETHICAL / LEGAL / YOU AND YOUR REC
Being explicit about how data will be managed and shared forms part of the typical ethical review process. While upholding legal and ethical requirements, Research Ethics Committees (RECs) should also support reseachers' efforts to share their data.
In research with people there may be a perceived tension between data sharing and data protection. In many cases, research data obtained from people can be shared while upholding both the letter and spirit of data protection and research ethics principles.
RECs can help play a role in advising researchers in this area and guide a researcher through the process of both gaining consent and looking after data ethically and legally.
A REC may request that personal data collected during research - that is data that can identify respondents - should be destroyed after a certain time period to avoid possible disclosure. However, it is important to distinguish between personal data collected in research, and research data in general (see definitions of personal, sensitive or confidential information)
Personal data should not be disclosed unless specific consent has been given. Identifiable information can be excluded from data sharing. Thus, a REC should not ask researchers to destroy research data in general, but may ask for personal data to be destroyed.
A REC should also not object to any statement in a consent form that asks for wider sharing of research data. If research data contain sensitive or confidential information, then the sharing of such data should be considered carefully, but should not be dismissed as being impossible. If in doubt, refer the REC to our Guidance for RECs.
Contact us for advice when unsure how to address the sharing of research data as part of an ethical review process, or if conflict exists between the need to archive data and a REC's recommendations on data management