The BeeWell Survey

This seems like it should be flagged to the ICO potentially?

Ive contacted them before and they are very helpful.

I know that the excellent TT blog focuses on the promotion of gender identity and I'm glad to see them raising the actual issue of whether measures that supposedly promote pupil wellbeing (mindfulness etc) are actually effective, with some research suggesting that they're not.

But the proposals to link this data to every aspect of a child's future life - physical and mental health, employment, income etc (as seen in the screenshots in @BonfireLady 's posts at 07.17 above) is Orwellian in the extreme. Surely this must breach GDPR principles - especially as parents are being asked to sign away their child's data for ever to these unaccountable organisations and individuals.

This really needs some journalistic investigation into all this.

I think anyone who is asked to let their children take part should opt out, contact school governors, MP, and press. The signing away their child's rights in perpetuaty is mind boggling, is it legal?

@MrsOvertonsWindow I can’t really explain my concerns any better than you have here. I am appalled that no-one has taken this up and challenged it - MPs, the newspapers? Most parents are probably naive to the potential breach of personal data and the fact that they are in effect signing away their children’s personal data for perpetuity by participating in this, some through lack of understanding of how this stuff works and others through simply trusting that a) the schools have done their due diligence before choosing to take part in this programme and b) that those carrying out the research (due to having ethical approval) have a level of respectability that put them above reproach.

I have actually decided I will write to my MP next week about this as some of his constituents are in the areas where this is being carried out.

This does seem to be an unauthorised and intrusive mining of personal and confidential data involving children by organisations with zero concern for the children but intent on using it as a source of significant income. It seems as if they propose to link a child's views as expressed via a questionnaire in schools with actual NHS data about that child's physical and mental health ?!!
It seems very naive of schools not to have 1) examined the extent of data being captured and 2) assuming that just because the organisations involved have the veneer of respectability they're not also involved with all sorts of dubious organisations and individuals - the promotion of gender identity giving a very clear message that safeguarding children from age inappropriate issues is not on their radar.

The most confidential information about a child's physical and mental health can be accessed by "named members of the research team"? The potential for bad faith actors, predatory individuals and dodgy organisations to get access to the most confidential of personal data about individual children seems limitless? Are parents really giving informed consent about this for their children?

Outside of the pernicious promotion of gender identity to children too young to make an informed decision, the potential for the misuse of critical personal data about a child's mental and physical health seems profound. I've no doubt that those in charge are eyeing up the potential £££££s they'll be able to extract from the NHS etc but should children's health and personal data be being used in this way?

Those t's and c's linked above are very concerning!

Indeed!

Regarding children's personal information, it says in the online parents' information document that:

"This information will be provided by your child’s school or local authority."

So if they are asking you to write directly to them to opt out, logically, the university is already holding details about your child. Has the school also asked them to remove the records that they already have of your child? TBH I'm still reeling from the idea that it's apparently in the national interest for children's personal details to be handled in this way.... and that all these schools and local authorities agree.

..but also don't want to be 'that parent' or my child being the only one twiddling their thumbs whilst the rest of the class gets on with it!

Did the school say how children who don't participate will be separated from those who do while this is being done in the class? I completely understand how children might feel awkward if they are asked to leave the room or similar. Hopefully the school has an approach to this that doesn't involve children feeling this way?

Morning! In the end, I emailed the school directly to say I would like to opt out my child. They replied to say no problem, they'll make sure my child doesn't participate. No way was I going to contact a random at Manchester Uni with my child's details just to opt out.

Those t's and c's linked above are very concerning!

The BeeWell site has a link to Parents' Information at the bottom.

The FAQs have been removed (dead links) but the Manchester parents' information sheet on the "English" link is still there as a downloadable pdf:

https://beewellprogramme.org/parent-carer-information/

@BramleyMoore did you get chance to look at the details? To say it's concerning is an understatement IMO.

By not opting out, parents are giving BeeWell researchers permission to get whatever information they want about your child for however long they like, and link it your child's survey data.

They are incredibly vague about their future plans but the summary version is that "we'll track your child for life".

How can schools justify that ethically as an opt-out, let alone via GDPR? What if a parent doesn't see the school communication and their child is now signed up for this in to adulthood?
How would the child (future adult) even know that a team of researchers is accessing their health records and other personal information? 🤬

(As a side note, I wonder if they intended to leave this page live. It's from 2023.)

The middle screenshot below is from the "data protection and confidentiality" section that is referred to in the first screenshot.

Edited to add: I realised I'd been rather lazy asking that question to CautiousLurker so had a look on the BeeWell site. They do talk about GDPR too in the document, about it being a "public interest task" and a "process necessary for research purposes"...

Great thread. Thanks OP.

There are a couple of things at play here:

1. the content of the survey and how it sets the scene for gender identity belief as fact.... before asking children who are in the throes of teenage angst how settled and happy they feel with themselves.

2. the data handling.

On point 2:

You don't have to write to some random organisation harvesting data under such dubious circumstances and tell them.

Acc to the BeeWell website schools sign up to take part in this - therefore it should be down to the school to accept refusals to take part?

The fact that BramleyMoore has been told to write directly to the university to opt out (if this is preferred) suggests that all of the children's names have already been given to the people who are running the survey. Presumably they'll match the responses received directly from parents to the data that they already have. Otherwise it wouldn't make sense.

Which then links back to this...

So no, I’m afraid that even allowing for well intentioned claims about GDPR protocols, I’d never give consent for my children’s data to be used and accessed in any identifiable way.

@CautiousLurker1 have they put something on their website about this, or was this just a hypothetical? Either way, it certainly raises a bunch of questions about GDPR. Why are all the children's names already with the survey provider? Why is it opt-out? (Questions for schools/LAs, not you BTW 😁)

That blog is very revealing about how all this is embedded in our institutions and shamefully targeted at children.
The "Proud Trust" who appear to be embedded in BeeWell is the organisation who developed the dice game that they claim is suitable for 14 plus and involves teaching children a sexual activity about what can be inserted into which bodily orifice. Lots of threads on here about them:

www.mumsnet.com/talk/womens_rights/4584553-the-proud-trust

Acc to the BeeWell website schools sign up to take part in this - therefore it should be down to the school to accept refusals to take part? There is no statutory requirement for schools, nor therefore their pupils, to engage with the programme. Also, on the basis that they will fine you for a days absence, yet are putting aside a school lesson period to administer this at no benefit whatsoever to the individual children taking part, I’d be livid as a parent that their time was being allocated to something that the school has opted to participate in.

I escalate this to the headmaster and cc the school governors and LEA and make very clear that it should be up to parents/children to OPT IN not vice versa.

I'd be telling the school very firmly that they are responsible for your child while at school and that they may not involve them with this research. You don't have to write to some random organisation harvesting data under such dubious circumstances and tell them. The school has responsibility and I'd be asking for written confirmation that my child will not be involved in any way.

Gosh, this is concerning. And perplexing as I don’t understand why a study of this nature can’t be organised to take general cohort trends at prescribed intervals (ie track the same year group anonymously every couple of years) rather than what seems to involve using identifiable data.

Funnily enough was discussing this very survey with a friend the other day as my youngest is in the age group that might have been asked previously to take part, so was a bit concerned. From my perspective as my son was in a private school and they seem not to have taken part, I am deeply relieved.

I personally would not allow my child to take part in this for the same reasons we are asked whether we would allow photos taken in school to be shared on social media - I don’t feel I can consent on my child’s behalf because in doing so I am taking away their right to withdraw their consent when they reach 18 - by that time the images or - in this case - sensitive personal and MH/medical data is out in the public domain and irretrievable.

I am also cognisant of the fact that any claims to protect data is only as secure as the least compliant/competent person on the team managing that data coupled with the effectiveness of the cybersecurity firewalls put in place to protect it - and we’ve all heard stories about disgruntled or thoughtless staff or hackers with political agendas. Recall the medical data leaks from the NHS (Synnovis, June 2024) or the mass publication of client data from that Infidelity sex site (Maddison something?) a few years ago.

So no, I’m afraid that even allowing for well intentioned claims about GDPR protocols, I’d never give consent for my children’s data to be used and accessed in any identifiable way.

I have had this email from my child's school today. If i do not wish them to take part, I have to write to a Manchester Uni email address by 18th Nov. Don't really want them to do it purely on principle, but also don't want to be 'that parent' or my child being the only one twiddling their thumbs whilst the rest of the class gets on with it! My child won't mind either way as they already have their own thoughts about the concept of gender identity due to interactions with pupils at school.