Our future health

Received a letter with NHS logo today that is asking for participation in a huge, long running research project that aims to study the health of the population. Looking at blood work, DNA, BP and cholesterol etc.

Potentially lasting for a lifetime and beyond.

I’m really interested in health and science and am keen to help out of personal interest and the greater good but it’s quite a big thing to give consent to.

Anyone else got this letter, considering it or involved in working on it?

https://ourfuturehealth.org.uk/

I opted in for this & had all the tests etc about 6 months ago.

I was asked to signup as I give blood so signed up last year some time. Did some fairly detailed questionnaires but cant recall there being any further contact since then…probably should have checked whether they took some extra blood for sampling at my last donation!

Not had such a letter yet myself, but I have to admit the cynic in me assumes this is just so Palantir get a nice rich baseline dataset to do whatever honest and beneficial things they’re going to do with our health data, and definitely nothing nefarious or evil…

I’m signed up for the Bio- bank study which seems to be similar – had all the tests years ago.  Follow up questionnaires periodically on a range of things – and invite for further scans but the nearest centre is in Cheshire which is a long round trip for us

These big longitudinal studied are massively useful so if I ever get the chance I’m happy to sign up

Yeah I’m with Bio Bank too but all I seem to get are ‘short’ questionnaires that I get about 15 minutes into then give up.

health data, and definitely nothing nefarious or evil…

Yeah data protection is obviously a concern and it’s easy to get sucked into thinking ‘what if’ but if everyone felt like that how would any research and development ever occur?

Interesting there’s already this bio bank. If so why do we need another separate study to be set up and funded I wonder?

I opted in for this & had all the tests etc about 6 months ago.

Likewise.

Yeah data protection is obviously a concern and it’s easy to get sucked into thinking ‘what if’ but if everyone felt like that how would any research and development ever occur?

that’s a question for those to who our data is given up, rather than those who give up their data, no?

I work in the industry and am acutely aware of the privacy issues around this.
I know my company has very good safeguards, but with the expression of ai and ml processing the risk of deidentification is now more a case of when rather than if for large data sets under limited control.
I would go and have a look at the informed consent agreements but the statement on secondary use is so open to abuse that the time is coming where that will become much more explicit soon.
Properly controlled these data sets are incredibly useful and valuable (from a public health point of view as well as financially), so I applaud anyone taking part.

Those taking part, did you get any information back on your own health from the results of the tests, if you did what was it? Just cholesterol and bps?

Signed up last year before any testing centres existed in the area. Haven’t been to do the testing yet.

Those taking part, did you get any information back on your own health from the results of the tests, if you did what was it? Just cholesterol and bps?

I’d hope there was a mechanism for acting on any markers which might need intervention, like contacting your GP if it looks like you might benefit from statins etc.

That is a proper ethical issue that companies are facing now.
Imagine the prediction could identify that you will die young and there is no treatment. Along the lines of huntingtons, would you want to know? Some might, but others won’t.
Where does the position sit, particularly if an ai prediction is a percentage value and the consequence of taking a preventative action is life changing.

It is an incredibly interesting area but also an unbelievably challenging one with likely no correct answer.

Interesting there’s already this bio bank. If so why do we need another separate study to be set up and funded I wonder?

Because that’s how science works.

You publish your paper with all your methodology and results explained and then others can either replicate it, or try the same thing in different way’s to see if your results and their subsequent conclusions were correct. Plenty of papers get challenged and withdrawn when other researchers do the same experiments but can’t replicate the results, or do something slightly different and get results that  disprove the original conclusions/hypothesis.  It’s particularly important in medicine where obviously a lot of papers published will be the results of clinical trials for drugs so there’s a conflict of interest.  And it’s then only correct that Dr’s will want to do their own research as well to see if the medication has the same results with different cohorts.

Yes but this is just a huge pool of data being collected which many scientists from all over the world can apply to use for various research and studies. It’s not in it’s self a single study by a single set of scientists. It’s more like a DNA bank and bio bank sounds like the same thing being done do why not just have the one if it’s a government funded nationwide project.

They offered me an Amazon voucher to seal the deal.

Got my letter.

1.3M signed up so far, they need 5M, and they’re offering a £10 voucher.

I see the benefits to myself and the general population, but I can’t help but think this data including the DNA profile will end up in the hands of those who’d use it to people’s detriment. That includes authorised partner companies, and those who obtain it by hacking directly or hacking the authorised users, or just taking advantage of simple data security cockups.

It seems like such a juicy dataset that there would be huge motivations for organisations getting their hands on it through money, lobbying, sponsored hacking etc.