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Medical & health Thing 4: Sharing sensitive data


Sharing sensitive data requires careful consideration, but it can be done. Find out how.

Sensitive data can be shared!

Sensitive data can be human data (e.g. health and personal data, secret or sacred practices) or ecological data (may place vulnerable species at risk).

Given the nature of this type of data, you might expect that it can’t be shared and reused. But in many cases, it can be.

1. Explore one of these examples of published sensitive data:

2. How do you share and publish sensitive data?

  1. Browse through the ANDS sensitive data webpage.
  2. Click on the Publishing and sharing sensitive data flowchart to get an overview of issues and solutions.

Publishing and sharing

  1. If you have time: follow a couple of the links on the sensitive data page which are of particular interest to you.

Consider: Imagine you are either a researcher or a participant in a health survey:

  • Participant: what questions might you first ask the researcher about intended sharing and reuse of the survey data?
  • Researcher: What responses would you need to prepare to anticipate participants questions about publishing “their data for all the world to see”?

De-identification of data

De-identification is a process that balances the risks of producing safe data with maintaining useful data. When it is done well the risk of disclosing information referring to individuals should be negligible.

  1. Explore this guide to anonymisation of medical data
  2. Discover some tools and resources for information about de-identification of data.

Consider: are there any tools or resources you have come across that could help a researcher de-identify or anonymise their data?

Consent for data sharing

Informed consent is required from human participants before obtaining and publishing data. The best time to obtain consent is before the data are collected. Participants should, at a minimum, be informed about procedures for maintaining privacy and the conditions under which the data will be shared.

Explore one, or more, of the following consent forms that ask for permission to share research data:

Consider: would you be willing to sign that consent form?

If you have time, check out the Personal Genome Project’s Global Network Guidelines which say that "risks of participant re-identification are addressed up front, as an integral part of the consent and enrollment process; neither anonymity nor confidentiality of participant identities or their data are promised to research participants" (and if you’re really keen check out this article examining the issue in more depth).

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