Confidential and other sensitive information which contributes to or arises from research can include identifiable personal and health/medical data, indigenous data, ecological data about vulnerable species, and commercial-in-confidence data.
Information and data of this kind is commonly subject to legal, ethical and other obligations which impose restrictions on its access, use, and handling. Sharing these kinds of data often requires mediated access arrangements i.e. the data can not simply be published and made openly accessible. However, metadata records (which describe the data without directly reporting any of the confidential information) can still be published so that sensitive data is findable and citable even if the data themselves aren’t directly accessible. These discoverable metadata records can include descriptions of the specific conditions and arrangements required to access the data.
Although there may be restrictions on how sensitive data is used, its value to research and potential benefits to society are significant. Publishing data supports FAIR research principles and improves the integrity of research. The issues and approaches to publishing sensitive data are discussed in the ARDC’s comprehensive guide
Data that contains identifying information (i.e. names, contact details, or other information that allows individuals to be identified) needs to be managed carefully through access controls and data security measures. Privacy laws stipulate conditions on the publishing and sharing of identifiable data. Techniques such as ‘de-identification’ aim to protect the privacy of research subjects and can be considered when researchers want to publish their data.
Ethics and data sharing
There are various ways to promote and support the ethical sharing of data which is created in the course of research on human research participants. Researchers, research organisations, and ethics committees can and should all play a role..
Health and medical data
Health and medical data, including clinical data and clinical trials, are a type of sensitive data and often contain identifiable information. There are privacy, ethical, and consent issues to consider when a researcher wants to access or share health and medical data. The ARDC has written a guide to help researchers understand how to manage these complex but valuable data.
Data that pertains to Indigenous people is a complex legal and ethical terrain. Whether they are cultural, linguistic, medical or otherwise, such data usually need to be managed and shared with care and considerations of self-determination and the right of people to have a say about managing their cultural heritage in ways that are meaningful to them.
Data sharing considerations for Human Research Ethics Committees (HRECs)
This Guide provides an overview for items that members of Human Research Ethics Committees (HRECs) can consider when assessing applications which propose to share data.