Sensitive data are data that can be used to identify an individual, species, object, or location that introduces a risk of discrimination, harm, or unwanted attention. Major, familiar categories of sensitive data are:
- human medical/health and personal data, including information about secret or sacred practices
- ecological data that may place vulnerable species at risk.
Sensitive data can be published!
Publishing your data, or just a description of your data, means that others can discover it, reuse it and cite it.
- Sensitive data that has been confidentialised can be openly published and shared: see an example of a de-identified dataset with medical information in Research Data Australia.
- You can publish a description (i.e. the metadata) of your data without making the data itself openly accessible, which enables you to place conditions around access to the data.
- YouTube: A risky business... or is it? The benefits of publishing sensitive data in a snapshot (1 minute).
ANDS Guide to publishing and sharing sensitive data
The ANDS Guide - Publishing and sharing sensitive data outlines best practice for the publication and sharing of sensitive research data in the Australian context. This comprehensive Guide provides straightforward, step-by-step advice about what you need to know and do before publishing and sharing your sensitive data, including:
- confidentialising your human and sensitive ecological data
- what's legal
- what to include in a consent form requesting data publication and sharing
- sharing sensitive data that you did not collect
- making data discoverable: metadata
- conditional access to data: what is it; how do I do it?
- licensing your data
- depositing your data
- a comprehensive guide on most things you need to know about publishing sensitive data.
Publishing and sharing sensitive data decision tree
Funders, publishers, ethics and sensitive data
Responsible sharing of sensitive data is required or encouraged by peak bodies and leading publishers in human research. Check out:
- Section 3.2.2 of the NHMRC National Statement on Ethical Conduct in Human Research.
- ARC Discovery Program Funding Rules - applicants must now outline plans for the storage, access and reuse of data.
- Wellcome Trust joint statement on data sharing - to which NHMRC is a signatory.
- PLOS journals policy on making all data available.
- Nature publishing group journals require supporting data to be available to editors and reviewers at the time of submission, preferrably via public repositories.
The ANDS Guide Data sharing considerations for Human Research Ethics Committees covers: the role of Human Research Ethics Committees in data sharing, legislation, funder guidelines and requirements, informed consent and data sharing, de-identification, access control, licensing, and publishers and sensitive data.
Five safes of protecting confidential data
ANDS webinar (1 hour): Prof. George Altar (ICPSR and University of Michigan) and Dr. Steve McEachern (Australian Data Archive)
See how others publish sensitive data
The Australian Longitudinal Study on Women's Health (ALSWH) has been gathering data on the mental, physical, and social health of over 50,000 women since 1995. The survey data are used by over 650 collaborators - most of whom are not part of the original research team.
- Find out how they do it and why: Sensitive data sharing: benefiting women’s health
- View ALSWH in Research Data Australia
- Webinar: Introducing the ANDS Guide + A Sensitive Data Success Story (37 minutes)
Sensitive data in Research Data Australia
- Australian and New Zealand Neonatal Network Data includes medical and sociodemographic information about prematurely-born babies and families.
- The Elements of Cancer Care (EoCC) study includes data on demographics, treatment, and service use of patients undergoing chemotherapy in 12 New South Wales sites.
Advice on sharing sensitive data from here and abroad
- Licensing sensitive data with AusGOAL (Australia)
- Mukurtu - free, mobile and open source platform built with indigenous communities to manage and share digital cultural heritage (Australia)
- Managing and Sharing Research Data: a Guide to Good Practice - Corti et al. (UK)
- Guide to Best Practices for Generalising Sensitive Species Occurence Data - Chapman & Grafton (international)