Sharing research data and confidentiality: restrictions caused by deficient consent forms

Deficiencies or unclear statements in consent forms used for research with human participants may lead to publicly funded research data being unsuitable for sharing with other researchers. Long-term data use is encouraged or required by many of the UK research councils and other funding bodies. Researchers may fail to address long-term use and sharing of data when obtaining informed consent and when arranging to keep data obtained from participants confidential. Sharing data should not compromise confidentiality if care is taken to anonymize information where this is needed or has been explicitly requested. Whilst researchers should consider all potential uses of their research data in confidentiality and consent agreements, research ethics committees can provide better guidance by pointing out to researchers that long-term use, preservation and sharing of research data should be taken into account when informing participants and obtaining their consent.