Scottish school pupil ‘sex survey’ data offered to researchers

Data from a controversial survey which asked school pupils as young as 14 about their sexual experiences has been advertised for use by external researchers, without the explicit consent of children or parents, BBC Scotland has learned.

The Scottish government’s Health and Wellbeing census hit the headlines in 2021 after asking highly personal questions of more than 130,000 school children, raising concerns among education experts and families.

Parents said they were not told the nature of the questions in advance and were not asked to agree that their children’s private information could be shared.

A Scottish government spokeswoman said it had been “made clear” that the data – once shared with them – would only be used for statistics and research purposes and that pupils would not be identifiable from the results.

The Health and Wellbeing census was organised and promoted by the Scottish government but half of Scotland’s 32 councils pulled out following concerns about a lack of informed consent and worries over the anonymity for pupils.

In the end, 16 councils went ahead: Angus, Clackmannanshire, Dumfries and Galloway, Dundee, East Renfrewshire, Edinburgh, Falkirk, Glasgow, Moray, North Ayrshire, Perth and Kinross, Renfrewshire, Scottish Borders, Shetland, South Ayrshire and Stirling.

The pupils answered the questions online in classrooms and were told on the survey form itself that the information would not be shared.

In a section called “What Happens to My Answers?” it says: “The local authority will not tell anyone your answers, not your teacher or your family.”

However, the data is now being offered publicly to external researchers via the website of Research Data Scotland, a charity created by the Scottish government in 2021 with a stated aim of making it easier to access data around health and wellbeing.

The Scottish government did have a section on its website which said that “individual level data may be shared for research purposes”.

But many parents claim they were unaware that the answers might be used in this way – especially because the survey and communication about it were handled by individual councils.

At the time of the survey, campaigners warned that it must protect children’s right to privacy and give informed consent.

However, consent was done on an “opt-out” basis, meaning parents or pupils had to specifically refuse to take part.

The UK’s Information Commissioner’s Office has guidelines on consent which say it must be “opt-in”.

“There is no such thing as ‘opt-out consent’,” the guidelines say.

“Failure to opt out is not consent as it does not involve a clear affirmative act.”

Many parents said they did not see the letter informing them of the survey and those that did said it did not explain about the detailed questions on sexual history, relationships with parents, mental health and alcohol intake.

The questions that were asked varied for different age groups but those in S4 (ages 14 and 15) were asked about their sexual relationships and contraception.

One question asks: “People have varying degrees of sexual experience. How much, if any, sexual experience have you had?”

The multiple choice answers include “oral sex” and “vaginal or anal sex”.

It goes on to ask whether they or the other person used a condom the most recent time they had penetrative sex.

Some parents found out their children took part without their knowledge but when they asked to have their data scrubbed they were told that would not be possible.

Sonia, a parent from the east of Scotland who did not want to be identified, told the BBC she had grave concerns about the way children’s data was gathered and how it was now being shared.

“A lot of parents don’t even know their children participated in this,” she said.

“134,000 children participated, none of them with active parent consent and many parents never received the letters.

“They never opened the email or the letter is crumpled at the bottom of the school bag.”

Sonia said the health and wellbeing census had not initially sounded risky or sensitive.

“It was only once you then looked several layers down into the information that you realised this was a much bigger exercise,” she said.

“They also wouldn’t let parents see the questions.

“I think, once we’re starting to keep secrets from parents and secrets from children and we’re not asking parents to actively consent then we create a whole new level of risk and we start to break trust between schools and parents.”

Academics say there are serious concerns about sharing the data without consent and about linking it to other datasets, as this significantly raises the risk of identifying children and their answers.

Lindsay Paterson, professor of education at Edinburgh University, said linking the information to other large datasets, including those about ethnicity, meant it would be far too easy to identify individual children – especially in smaller rural schools.

He said he had serious concerns about the “unethical” way the data was now being shared.

“No child and no parent has been asked for permission to pass the data on to other people,” he told the BBC.

“That’s not to imply that individual researchers are unethical, but the point is the ethical protection is there for a good reason because sadly some people will get access to the data and will abuse the confidentiality, the trust that should be there.”

One of the biggest concerns raised at the time of the survey was that it included pupils’ individual candidate numbers – through which children could potentially be identified.

In emails seen by the BBC, the Information Commissioner’s Office warned the Scottish government in 2023 that the way they had gathered, stored and transferred the data created potential risks that children could be identified by “third parties and rogue actors”.

It says it has engaged with local authorities and the government to help them implement measures to protect the data, and that it was continuing to monitor this work.

The Scottish Conservatives’ children and young people spokeswoman Roz McCall said: “It is unacceptable that young people’s trust has been betrayed in this manner despite the assurances given by SNP ministers that it would be kept confidential.

“They must urgently explain why this data has been shared and if there are any plans to conduct similar surveys in the future.”

A Scottish government spokeswoman said: “All participants in the survey had the opportunity to skip questions they did not wish to answer and councils were responsible for providing advice about opting out.

“It was made clear that the data provided to the Scottish government, and subsequently made available to external researchers, would only be used for statistics and research purposes and therefore not identifiable from any results.”