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
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
- The NHMRC's National Statement on Ethical Conduct in Human Research says
- 3.1.37 When researchers seek consent to collect information that is considered to be of historical, cultural or other long term value, they should obtain consent for its perpetual retention, including any planned re-use and sharing with others.
- 3.1.45 For all research, researchers should develop a data management plan that addresses their intentions related to generation, collection, access, use, analysis, disclosure, storage, retention, disposal, sharing and re-use of data and information, the risks associated with these activities and any strategies for minimising those risks.
- 3.1.50 In the absence of justifiable ethical reasons (such as respect for cultural ownership or unmanageable risks to the privacy of research participants) and to promote access to the benefits of research, researchers should collect and store data or information generated by research projects in such a way that they can be used in future research projects. Where a researcher believes there are valid reasons for not making data or information accessible, this must be justified.
- View the NHMRC outlining the new requirements for data management in the National Statement on Ethical Conduct in Human Research (September 2018)
- NHMRC 'strongly encourages' the sharing of research data in their Open Access Policy.
- View NHMRC outlining their data sharing statement (30 sec) (Feb 2018 - This statement has been now incorporated into the NHMRC Open Access Policy. See Section 4.2 and Appendix).
- Since February 2014, the ARC has required researchers to outline how they plan to manage research data arising from ARC-funded research. This requirement forms part of the application process for funding under the National Competitive Grants Program.
- The Australian Code for Responsible Conduct of Research has requirements (P3, R8, R22) for institutions and researchers to manage and share data responsibly.
- Wellcome Trust (UK) joint statement on data sharing, to which NHMRC is a signatory.
- Wellcome Trust (UK) policy on data, software and materials management and sharing.
- National Institutes of Health (USA) policy and guidance for data sharing.
- More funder policies can be found at FAIRsharing.org, a curated resource of standards, databases and policies.
Publishers
- 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, preferably via public repositories
- The British Medical Journal encourages authors to include a data sharing statement
- Many publishing companies are supportive of data sharing and work with the journals they publish to facilitate this. See how Wiley approaches this topic (61 sec)
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.
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:
- Watch a video about the Five Safes (4 min)
- Read about the Five Safes
- Watch the ANDS webinar about implementation of the Five Safes in Australian and American archives (62 min)
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
- Explore the record for ALSWH in Research Data Australia
- View the ANDS webinar: introducing the ANDS Guide - Publishing and Sharing Sensitive Data and outlining how ALSWH shares their data (37 min)
Other advice on sharing sensitive data
- Mukurtu. A 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 Occurrence Data Chapman & Grafton (international)
- The Open Data Institute has a Data Ethics Canvas tool you can use throughout a project lifecycle to identify ethical issues around sharing your data, and aid in decision making.