Current status: Answered by Jenny Gilruth on 18 June 2024
To ask the Scottish Government whether it still plans to add the data from 134,000 children gathered in the Health and Wellbeing Census to the Administrative Data Research Scotland system; what its position is on whether the data was captured ethically and legally, and whether it will implement measures to mitigate any risks of being able to link the data back to the respondents, in light of the Information Commissioner's Office advice to the Scottish Government in August 2023 that the arrangements for processing the data did not meet requirements of Article 4(5) of the UK GDPR around pseudonymisation, and Article 25 around Data Protection by Design and Default.
The Scottish Government is fully committed to making best use its data, including making this available for further statistical analysis and research, subject to data protection legislation. The 2021-22 Health and Wellbeing Census data was added to Administrative Data Research Scotland (ADR-S) in May 2024. Further information on ADR-S can be found here: ADR Scotland - ADR UK
The HWB Census underwent an Ethics Peer Review in line with the Scottish Government social research: protocols and guidance. Scottish Government social research: protocols and guidance - gov.scot (www.gov.scot)
Data provided into the ADR-S infrastructure does not include the Scottish Candidate Number (SCN). The SCN is replaced with a pseudonym for this purpose.
In light of the ICO's recommendations, the Scottish Government is introducing enhanced technical and organisational measures to ensure that any data which contains the SCN and is processed for statistical and research purposes will have a pseudonym created. The SCN and the method of pseudonymisation will be held separately. These enhanced measures have been agreed with the ICO.