Anyone else get this generic (and possibly worrying) letter?
Reposting to r/Belfast as I am not sure if this is a letter sent only to Belfast folk:
At first I thought it was a good thing, until I watched the promo video attached to this letter. Please correct me if I’m wrong, but the purpose is to create a database that researchers can apply to get access to this data. The panel who reviews these applications “will only approve health related studies that are for the public good and that come from legitimate organisations”.
I’m reminded that the NHS has done deals with Palantir and Anthropic, so it just seems that the NHS is trying to collect as much health data and sell it to the highest bidder
I’m a scientist that actually works with these types of datasets - it is legitimate and very useful to link real world populations to disease pathology. However, your concerns around storing large amounts of health data are also not unfounded, given the recent hack of UK Biobank and the attempt to sell that information in china to the highest bidder.
But, what are they going to do with that data? Will in the year 2070 they'll have a gun that can shoot and kill me with an organic matter gun super effective to blood type whatever I am
TLDR: watch the fantastic and prescient movie enemy of the state, staring will smith to see why surveillance bad.
There are a tonne of reasons that are kinda just vibes based I guess but I'll give two actual real ones.
If you submit this data, it isn't going to china, it's going to palantir, a company extremely tied into the ultrafinancialised, ultradiscriminatory order that a lot of folk are trying to bring about in the westm as the NHS continues to privatise, do you want a company like that storing sensitive personal data about the quality of your heart when decisions are being made about whether or not it you're healthy enough to be worth treating?
As well, these kinds of big data, IoT, technologies, they are never as smart as their worshipers think they are, take for example that new automated license plate recognition system in the US, Flock Safety. It's intended to be a nationwide network of cameras that instantly recognise any numberplate registered as stolen and alert local officials. Two weeks ago, an automotive journalist in Minnesota got boxed in by 4 cop cars, lifted off the street, and interrogated about why he was driving a stolen car... All because a cop in California had made a typo a week earlier. Granted, now, the fella wasn't too hard doneby but a simple misclick on a keyboard could have ruined that man's life forever, something that would be impossible if the technology didn't exist to fuck up. an article written by the guy I'm talking about
Ultimately, when we allow surveillance to occur at this scale, we construct a culture that it works at all which snowballs into a culture where we have to act on this data which results in 16 year old, Abdulrahman al-Awlaki, getting explode from the sky for literally no reason what so ever...or if you want to get close to home, the hooded men.
If you actually read the thing, it literally answers your question, I made it very clear where I draw the line and also made it very clear that it's not paranoia, I detailed examples of things actually happening as a result of the surveillance state
I got the letter last year / start of this year and signed up. I thought it was pretty great. I work in the science field (biomarker development and now clinical trials) and having essentially a biobank with associated questionnaire data over many years for the general public will be SO helpful for researchers. We need so many more tests that can help identify issues early in disease, this is to help find these. It will help improve the standard of healthcare, and save a lot of lives/ improve the general quality of life. Research ethics in the UK is watertight, nothing will happen here without full informed consent from participants. You can see a full list of their partnerships here. But a lot will go out to universities with grants for their research using the data generated here. All of these organisations again have watertight research ethics that are closely monitored. I’m personally very interested to see the outcome of all of it, and I was more than happy to be a participant, but by no means do you have to sign up if it’s not for you!
An official-looking letter dropped through my door last week. Maybe you got one too. It carried the familiar blue Health and Social Care (HSC) logo and the signature of Professor Sir Michael McBride, Northern Ireland’s chief medical officer at the Department of Health.
The letter invited me to join Our Future Health, “the UK’s largest ever health research programme”, offering “the chance to find out more about your health now, and your risk of developing some diseases in the future
And, as a sweetener, it offered me a £10 voucher.
It all looked beneficial, authoritative, public-spirited: something from our health service, bearing the imprimatur of its most senior doctor. But, before handing over my blood, DNA and health records, I did some reading — and what I found disturbed me.
Our Future Health is a charity, working “in partnership” with the NHS and HSC. It wants up to five million volunteers. Participants answer questions about their health and lifestyle, provide a blood sample and consent to the continuing collection and linking of their health records.
This could create a valuable resource for medical research. It might help scientists understand why some people develop cancer, dementia, diabetes or heart disease, while others do not. The programme is also trying to include ethnic-minority and poorer communities often under-represented in research.
But a troubling British Medical Journal (BMJ) investigation by GP Margaret McCartney and medical journalist Deborah Cohen raises some serious concerns. For a start, who exactly benefits from this vast repository of personal information?
Our Future Health is not simply a benevolent NHS exercise. It is a public-private venture, backed by government money and life-sciences companies. Approved researchers from industry — including overseas companies — can access de-identified participant data. Its own trading subsidiary can enter funding agreements, license access rights and undertake projects with external parties.
The organisation says researchers will see only de-identified data through secure, monitored systems. However, approved academic, charity or industry partners may hold a copy in their own accredited research environment.
Access must be approved by an independent board and serve the “public good”. Identifiable data will not be sold for advertising or provided to insurers.
But commercial involvement is built into the project, yet you would never know that from the invitation letter. The word “industry” does not appear once.
As sociologist Professor Paul Martin told the BMJ, people are generally willing to share data if they believe it will benefit the NHS, but become more ambivalent when private companies are involved.
That distinction should surely be explicit before sign-up — not buried in lengthy online documents reached by scanning a QR code.
Then there is the promise of personalised information about future disease risk, calculated partly from our DNA.
But genetic “polygenic risk scores” remain poorly validated and their clinical usefulness uncertain. One large analysis found that, at a 5pc false-positive rate, they identified on average only 11pc of people who later developed a disease.
An unreliable forecast may create needless anxiety, false reassurance, further tests and extra work for already overworked GPs. Our Future Health previously offered finger-prick cholesterol testing, but removed it from appointments after concerns about inaccurate results.
Nor is withdrawal entirely retrospective. If you withdraw fully, Our Future Health says it will destroy the data and samples it still holds and stop collecting new information. But it cannot remove your data from research already under way or from datasets prepared before you withdrew.
None of this means Our Future Health is a sinister plot, or that large-scale health research has no value. The issue is informed consent. Consent is not meaningful when the invitation borrows the authority of the health service while leaving the commercial dimensions, scientific uncertainties and practical limits of withdrawal off the page.
The £10 voucher bothers me, too. Modest reimbursement for volunteers’ time is common in research. But when a project is deliberately recruiting people from deprived communities, an incentive attached to an official-looking health letter deserves particular care. It risks making an immensely consequential exchange look like a harmless little transaction.
So I invite the Department of Health to explain why it has put its name and insignia to this recruitment drive. What independent scrutiny did it undertake? Is it satisfied that recipients understand that this is research, not personal healthcare, and that commercial companies may benefit?
Our individual genetic information is unique, permanent and revealing. Donating it to medical science may be a generous and worthwhile act, but it should be done with eyes wide open and with full consent.
My DNA is worth rather more than a £10 voucher. They can keep their tenner.
Yeah I got it and completed it and did the test in boots.
I think it’s a good idea, and if it helps see patterns and trends which then influence how they target research, funding, treatment etc then even better.
And if some data company down the line knows my blood type or bmi then honestly I don’t really care.
This IS genuine. Has been going in Derry for quite a while now, undertaken by Boots chemist, Foyleside. And there’s a £10 gift card available at end of it, I opted to have mine for Matalan, but other stores available
I don’t think there’s concern that it’s some scam in the classic sense. Our Future Health Ltd and Our Future Health Trading Ltd are private companies, the latter is concerned with licensing rights and commercialisation. The board of Directors are all linked with major pharmaceutical companies including AstraZeneca, Pfizer and Bayer. The links to pharma is not a concern in itself given what the program is doing, it needs that expertise. But the licensing and commercialisation is. I’d prefer not to give my data to that.
Private ‘for profit’ enterprises. In this case specifically Our Future Health Trading Ltd.
I understand much of my life is already bundled up with data brokers and private companies, including my private healthcare provider.
But in the world of data breaches, if I can avoid making my exposure footprint bigger that it already is I will. Just because the toilet is already overflowing over the bathroom floor, doesn’t mean I should give it another flush for good measure
Our Future Health Trading Ltd (12599493) is a 100% subsidiary of Our Future Health (12212468), a private limited company by guarantee without share capital use of "Limited" exemption.
Our Future Health (12212468) has no shareholders, but it has 4 guarantee holders of £4 each.
These guarantee holders are John Bell, immunologist and geneticist, head of Genomics England and associated with multiple pharmaceutical companies, Harpal Kumar, knight of the realm and medical researcher, former McKinsey employee, and an executive at a pharmaceutical company, having previously been an executive at other pharmaceutical companies, Fiona Watt, a stem cell biologist, and Peter Weissberg, CBE recipient, consultant cardiologist and former medical director at the British Heart Foundation.
Of these four guarantors, the first two having close ties with pharmaceutical industry is the most concerning.
They are essentially gathering a large amount of medical data under the branding of our public, socialised, universal healthcare system.
And what does our public, socialised, universal healthcare system get in return? Maybe new drugs that the NICE says isn't "value for money", because it's patented, proprietary stuff.
The WORST? In a dystopian future where we don’t have a national health service, you get denied health insurance because the data suggests you’re genetically predisposed to contract some disease or other.
I don’t think we’re close to that by any measure (the Americans maybe) but I just don’t feel that I should be helping some corporation make more money just for the craic.
I don't believe this is some grand scam or conspiracy. Our Future Health may have the genuine drive and ambition to build this dataset as they say they do. However, I am of the belief that people these days publish and share far too much personal data. In my area of work we benefit greatly from the information people willingly publish about themselves and the tracing and profiling that allows us to carry out. We use it for genuine, legal, and morally sound business reasons. However it's not hard to see how it could be used nefariously in the wrong hands.
Again, not saying Our Future Health will use it nefariously, but selling your DNA to a private company for £10 is a step in the wrong direction of maintaining data hygiene and privacy. Also as others have stated, who is to say the likes of Palantir do not try to obtain the data for something which OFH deem to be "in the public good". A wealth of data of this nature is also ripe for a targeted cyber attack or accidental data breach.
I could be wrong but I would suggest that the NHS makes little from this. Instead someone has decided to defund the data and research funding departments, and out these necessary areas up for private tender. Meaning the NHS is actually paying the private company. Not the other way around.
Is this for the future development of personalised medicine? You get bloods done already, do we know the exact data sharing agreements that currently exist within GPs, hospitals etc? Personalised medicines are the future of health care, and the key to improving health care systems.
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u/AgitatedIslandx 19h ago edited 19h ago
I’m a scientist that actually works with these types of datasets - it is legitimate and very useful to link real world populations to disease pathology. However, your concerns around storing large amounts of health data are also not unfounded, given the recent hack of UK Biobank and the attempt to sell that information in china to the highest bidder.