Jeremy Balfour MSP to Sir Robert Chote – Health and Wellbeing Census Scotland

Dear Sir Robert

Thank you for your response to my letter of 19 Dec 2024. My constituents are grateful that after 30 months, the Office for Statistics Regulation (OSR) is following up its original request to the Scottish government to publish a review around the legal and ethical governance arrangements relating to the Scottish Health and Wellbeing Census for school children.

In your letter, you clarify that the original requested review relates only to the questions for each age range, rather than a “review of the survey and data governance processes as a whole”. A more thorough review would, obviously, cover elements that are within the remit of the Information Commissioner’s Office (ICO).

My constituents appreciate you are only able to act within your remit. However, whether the questions for each age range are legal or ethical, depends on the entire context of the survey and the data governance processes. Prof Lindsay Paterson covered this in his ethics briefing on the census. Therefore, a review with the limited scope around questions and age range, could not properly establish the legal and ethical position.

Other factors affecting the legal and ethical position, include the extent to which legal and ethical failings in various areas were accidental or otherwise, and why the research implementation was continued without pausing, when valid concerns were raised by credible organisations and parents. For example, an article in The Times on 6 Dec 21, reported that a Scottish Government spokeswoman’s response to concerns was that it would be “irresponsible to withdraw a census which focusses on children and young people’s health and wellbeing”.

This project has been characterised by misleading statements from the beginning, for example, the same article in The Times, reports that the Scottish Government spokeswoman also said: “Health and wellbeing surveys like this one are not new and play a crucial role in ensuring children and young people have access to the help, advice and services they need”, when of course, no previous survey was directly comparable with this, and it was new for the Scottish Government to gather such data with identity numbers for storing indefinitely for continued cross linking, and attempting to do so with every single child in the country.

Therefore, my constituents are concerned that at this stage, if a siloed legal and ethics review is published that only focuses on the questions and ages they were asked, and it does not address the whole context of the survey and data governance in which the questions were asked, response to valid concerns and what has happened since, then this has the potential to further mislead the public.

To prevent this, and to be of any value, they believe the scope of this review must widen to encompass all concerns that have been identified, including the involvement of the ICO with local authorities in April 2022 and with the Scottish Government since the OSR’s original letter.

They believe the review must also address why the original internal ethics peer review carried out by the Scottish Government was not adequate, and why some advice offered by the Scottish Government’s internal legal and data protection staff appears not to have been followed.

Therefore, I will write to the ICO about this. Can I ask for your support in putting these concerns about the legality and ethics relating to the overall survey and data protection governance to the ICO, and for the need to consider this issue in its entirety, to ensure that the review published by the Scottish Government does not further mislead the public by being incomplete?

Yours sincerely

Jeremy Balfour MSP

Jeremy Balfour MSP to Sir Robert Chote – Health and Wellbeing Census Scotland

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