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Safely sharing sensitive data

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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:

  • personal data
  • health and medical data
  • 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 de-identified can be openly published and shared: 
    • An example of a de-identified medical dataset 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

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.

Funders, publishers, ethics and sensitive data

medical webinar screenshot

View Australian health and medical funders and publishers providing their perspective and support for data sharing (25 min).

Responsible sharing of sensitive data is required or encouraged by peak bodies and leading publishers in human research.

Funders

Publishers

Ethics

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.

eithics applications webinar

View advice on how to plan for data sharing in research ethics applications (9 min).

Five Safes of protecting confidential data

The Five Safes is a framework to provide secure access to carry out work that would not usually be possible with de-identified data:

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.

Other advice on sharing sensitive data