Research Data Things 10/23 - Sharing Sensitive Data

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This thing asks us to imagine a scenario...

Imagine you are either a researcher or a participant in a health data 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”?
These questions are being asked and weighed up by many Australians now in relation to the 2016 census in which the ABS has announced they will be retaining personal data.





This article from the Australian Financial Review points out the factors being weighed up. One of which is that participants may not answer truthfully (or at all) if they know their answers and identifying information will be retained, and even with an anonymised key be used for increased data matching. The shadow of Big Brother looms for many and in some circles civil disobedience has been suggested wherein people do not complete the census - or go bush camping that night so they are not in a residence and obliged to take part.

One key difference here is that for most research, participation is voluntary - in the case of the census participation is mandatory.

Here is the ABS statement on the benefits of retaining this data.

Following through the link to the Privacy, Confidentiality and Security information it becomes clearer that the retention period is in effect being extended from the previous 18 months (for completion of data processing) to four years or less if there is no longer any benefit...
"For the 2016 Census, the ABS will destroy names and addresses when there is no longer any community benefit to their retention or four years after collection (i.e. August 2020), whichever is earliest."
While the ABS is not planning to share identifying data the questions and concerns are relevant and emotive and demonstrate how critical it is to the integrity of data being collected to ensure that participants understand the custodial and potential sharing arrangements.