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Old 10-04-2021, 07:24 AM   #1
hazel
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Harvesting of medical data: how do people here feel about it?


Increasingly "Big Pharma" wants to use patient data from the NHS as a research tool. Now I am a participant in one or two research programs to which I have contributed private medical and genetic data, but that was by my own choice. I volunteered for this because I wanted to make myself useful to society. I feel very different about allowing my NHS data to be harvested and used in this way.

I have written a letter to my GP making it clear that I do not consent to any uses of the data they hold on me except for the purposes of treating my illnesses. In particular I do not consent to them sharing it with anyone outside the health service. But I suspect that very few people have done the same.

It seems to me that we are sleepwalking into a world in which commercial AI can scan and sift huge medical datasets to discover just about anything or everything about us. Some of what is found will be medically useful but none of it will have been obtained by anything that I would regard as informed consent.
 
Old 10-04-2021, 07:56 AM   #2
Keith Hedger
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Freedom, privacy or convenience, people are on the whole lazy and will always choose the later, that way they don't have to think and if it all goes tits up they can blame Big Pharma/Government/Corporations/Chinese hackers etc etc ( select your prefs ).
 
Old 10-04-2021, 07:57 AM   #3
smallpond
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Not just data. Read the history of HeLa cells to see how your biological samples may be used. When I've been in hospital I confess I have never read through that long consent form standing between me and getting treatment.
 
Old 10-04-2021, 08:18 AM   #4
Ser Olmy
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Quote:
Originally Posted by hazel View Post
Increasingly "Big Pharma" wants to use patient data from the NHS as a research tool.
So you've paid for the NHS through your taxes, and now a number of huge, private companies wants free access to this data in order to profit from it.

Corporations will always seek to externalize all risks and costs, while keeping all the profits.
 
Old 10-04-2021, 08:25 AM   #5
hazel
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Whether it's free or whether they pay for it is irrelevant. What is relevant is that hardly anyone in this country has given free and informed consent to it. Here are a couple of quotes from an advertorial insert in the New Scientist:
Quote:
Using NHS electronic health records, which can potentially capture the longitudinal medical history of 98% of NHS users, could solve some of the patient recruitment problems common to trials.
Quote:
AI and machine learning has begun to expand our ability to analyse these increasingly large data sets.
98% of UK citizens! Just like that! Instead of having to recruit volunteers for trials that they know they are taking part in, we can all be enrolled without most of us even knowing.

Last edited by hazel; 10-04-2021 at 08:30 AM.
 
Old 10-04-2021, 05:51 PM   #6
rkelsen
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Quote:
Originally Posted by hazel View Post
98% of UK citizens! Just like that! Instead of having to recruit volunteers for trials that they know they are taking part in, we can all be enrolled without most of us even knowing.
Hazel, I think you're panicking unnecessarily here.

You cannot be enrolled in a clinical trial without your knowledge and consent.

The data with which you're concerned will probably be used to identify patients with particular medical conditions so that they can be invited to participate in any currently running studies if they check into a hospital. Most likely, the patients in question will have some form of rare terminal illness for which there is no existing treatment or for which all existing treatments have failed.

Last edited by rkelsen; 10-04-2021 at 06:29 PM.
 
Old 10-05-2021, 09:26 AM   #7
jmgibson1981
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I don't much care what they do with my information. If my information can help toward a specific problem then so be it. The concept of privacy has gotten way out of hand in my opinion. If you don't share anything then you really aren't contributing to the greater good so to speak. Not to say all their uses of said information are noble of course. But hiding everything behind "privacy" is somewhat selfish in my mind when it could provide an insight into solving X problem.

There probably is no right answer really.
 
Old 10-05-2021, 10:47 AM   #8
business_kid
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I feel the drug companies prioritise profit over people every time.

I was recently perscribed Fosamax, did my basic due diligence, and discovered that Merck are offering $27 Million to settle a class action lawsuit in the Excited States because it robs all the calcium from you jawbone.

My guess is the drug companies want to leverage AI + NHS Statistics to replace drug trials, preferably without them being liable for the side effects of their own products.
 
Old 10-05-2021, 11:49 AM   #9
cynwulf
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Without some kind of cited source, this is simply yet more faecebook style hysterics. Surely you can find some other platform for this nonsense?
 
Old 10-08-2021, 09:57 AM   #10
sundialsvcs
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In the United States, the "HIPAA" Act imposes draconian restrictions on the handling of so-called "PII = Personally Identifiable Information" and all forms of medical records. It sets rules on both medical hardware and software, and human practices.
 
Old 10-13-2021, 02:31 PM   #11
obobskivich
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Quote:
Originally Posted by sundialsvcs View Post
In the United States, the "HIPAA" Act imposes draconian restrictions on the handling of so-called "PII = Personally Identifiable Information" and all forms of medical records. It sets rules on both medical hardware and software, and human practices.
HIPAA and GINA specifically forbid this kind of 'dragnet' collection in the US, and biomedical studies are also further controlled under Common Rule (45 CFR 46) - revocable informed consent is required. From what I understand many other places in the world do not have similar laws (and there's historical reasons why the US has these laws - they aren't arbitrary), but some probably do - based on the statement of 'NHS' I'm going to assume this is a UK context (hazel's original post). I'd suggest looking into if the UK has equivalents to any/all of these regulations (Wikipedia did not turn up anything easily - otherwise I would've pasted it here).
 
Old 10-14-2021, 06:48 AM   #12
business_kid
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In the EU, we have GDPR, although it remains to be seen how well it's enforced, because all the big internet names have come under scrutiny. The UK have to chart their Independent course on that one.
 
  


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