Working with Sensitive Data

Sensitive data could have significant value for research and society, but working with it requires extra care. Explore this guide to the ethical considerations surrounding sensitive data.
A psychologist with a clipboard taking notes and listening to a senior woman patient at a psychotherapy session

Sensitive data is data that can be used to identify an individual, species, object, process or location, and introduces a risk of discrimination, harm or unwanted attention. Often confidential, it can include:

  • identifiable personal data
  • Indigenous data
  • health and medical data
  • ecological data
  • commercial data.

While potentially beneficial to research, sensitive data is commonly subject to legal and ethical obligations that impose restrictions on how it is accessed, used and handled. The data often can’t simply be published and made openly accessible. But metadata records can help with sharing sensitive information, if the records describe the data without directly reporting any of the confidential information.

ARDC Resources for Working with Sensitive Data

Explore our resources for best-practice advice on accessing, using, publishing and sharing sensitive data ethically.

Identifiable data

Identifiable data

Data that contains identifying information, such as names and contact details, needs to comply with privacy laws and be carefully managed through access controls and data security measures. Techniques such as ‘de-identification’ of identifiable data can protect the privacy of research subjects.

Indigenous data

Indigenous data

Data about First Nations peoples constitutes complex legal and ethical terrain and can relate to cultural, linguistic, medical or other factors. This data needs to be managed and shared with care and with consideration of self-determination and the right of Indigenous people to have a say about managing their cultural heritage in ways that are meaningful to them.

If your research involves handling, managing or analysing Indigenous data, you should consider applying the CARE Principles for Indigenous Data Governance.

Health data

Health data

Health data can have significant benefits. For example, clinical trials data can lead to insights about the effectiveness of health interventions and therapies, which allows for health guidelines and treatments to be improved. However, the sharing and reuse of health data are often limited by diverse approaches to data governance and management.

Our Health Studies Australian National Data Asset (HeSANDA) activity has delivered Health Data Australia, a national platform for discovering, requesting access to and sharing Australian health data. Further tools and guides have been developed to facilitate clinical trials data sharing and collaboration.

Ecological data

Ecological data

Ecological data is central to research and policy on such pressing environmental issues as biodiversity and climate change, but it may be sensitive and restricted if it reveals the location of rare, endangered or commercially valuable species, or other conservation efforts.

Working with research and government partners, we’ve delivered the Restricted Access Species Data (RASD) Service, a national source of data on restricted access species, and a nationally consistent RASD sharing framework.

Publishing sensitive data

Publishing sensitive data

Although there may be restrictions on how sensitive data is used, its value to research and potential benefits to society are significant. It is important to understand how to publish sensitive data for maximum benefit in a way that is safe and ethical.

Data sharing considerations for human research ethics committees (HRECs)

Data sharing considerations for human research ethics committees (HRECs)

People on human research ethics committees (HRECs) have an important task to navigate the processes involved in ethically and legally sharing sensitive data. Our guide can help committee members confidently assess applications, and manage and share sensitive data throughout the data’s lifecycle.

Trusted research environments (TREs)

Trusted research environments (TREs)

Trusted research environments (TREs) are highly secure, controlled computing environments that allow researchers to gain access to and analyse data in a safe way.

Our Trusted Research Environments activity is establishing a framework and common understanding for TREs in Australia. Working with our partners, we’ve also delivered the E-Research Institutional Cloud Architecture (ERICA) and the Secure eResearch Platform (SeRP) for health and medical research and more.

Dataspaces

Dataspaces

A dataspace is digital infrastructure that enables data transactions between participants, based on the governance framework of that dataspace. It is used for securely sharing restricted access data. The vision for dataspaces is to create trusted, secure ecosystems for data exchange where all participants follow agreed rules. Data providers set the usage policies for their data and control over that data can persist even after it is shared. 

Through our Australian Dataspaces activity, we’re exploring the potential of applying the dataspaces concept to the Australian data landscape.

Australian Sensitive Data Interest Group (AUSDIG)

Co-facilitated by the Australian Data Archive (ADA), Population Health Research Network (PHRN), Melbourne Data Analytics Platform (MDAP) and ARDC, the Australian Sensitive Data Interest Group (AUSDIG) provides an opportunity for anyone interested in discussing the challenges and strategies for managing sensitive data. Meeting every month, it rotates through such topics related to sensitive data as ethics and governance, technology, and best practices.

Australian Sensitive Data Interest Group (AUSDIG)