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Would you want to know the results?

B3B3 Posts: 27,505
in The potting shed
https://www.bbc.co.uk/news/health-63331805
I'm not sure that I would.
In London. Keen but lazy.
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  • nutcutletnutcutlet Posts: 27,445
    yes I would. 


    In the sticks near Peterborough
  • UffUff Posts: 3,199
    Yes I would. I can deal with knowing better than not knowing. 
    SW SCOTLAND but born in Derbyshire
  • ObelixxObelixx Posts: 30,090
    OH and I do an MOT every 2 years - blood test to check cholesterol, sugars etc - plus my GP checks heart rate and BP.  We also do the regular cancer checks that are generally offered so, unless there is something very nefarious and well hidden, it would seem we're in good nick.  Possum gets blood and BP checks every time she gives blood.

    If I took part in such a survey I'd expect to be informed of anything potentially dangerous so it could be dealt with and, surely, catching something early and treating it would be a valid part of any research.   I'd be inclined to sue for damages if some piece of data could have saved me or a loved one from severe illness or worse and nobody shared that info.
    Vendée - 20kms from Atlantic coast.
    "The price good men (and women) pay for indifference to public affairs is to be ruled by evil men (and women)."
    Plato
  • ObelixxObelixx Posts: 30,090
    I don't think it's beyond the wit of man or woman to design a programme which stores data anonymously for research purposes but can also alert the provider of that data that there is a problem that needs attention.   I don't mean obvious stuff like obesity or alcohol levels or other drugs in the blood because there's enough info out there for people to manage their health but things that can only be spotted early by blood tests or scans or whatever else the research is based on.
    Vendée - 20kms from Atlantic coast.
    "The price good men (and women) pay for indifference to public affairs is to be ruled by evil men (and women)."
    Plato
  • FireFire Posts: 19,096
    pansyface said:
    And I’m still angry about it after several years.


    @Obelixx said
    I'd expect to be informed of anything potentially dangerous so it could be dealt with


    I'm part of various trials and they make it very clear that nobody will get any personal feedback. The data is anonymised. If the trials didn't state this in the contract, they should have. They are usually very careful. But often people don't read the paperwork.e

    I am part of the Decode ME trial. I think a lot of people signed up because they thought they would get personal answers, but they should have checked the small print. We do these large trials to take forward science, not for our own ends.

    https://www.decodeme.org.uk/

    But to answer B's question. Yes, you all need to know, because diseases like Parkinsons and some dementias start decades before you have noticable symptoms and there is very much more to you can do to address them in your 40s and 50s than if you leave it too late. Head in the sand is no good to anyone.

    Get scanned. Self check. Do genetic testing. Take prophylactic actions. Take advanatage of all the scientific advances you can. Learn whatever you can so that you can tell your family of any predispositions they might have. My father's family were very secretive about their diagnoses, even though it have might help extended family to know (in some cases). The selfishness still makes me furious. 

  • JennyJJennyJ Posts: 10,576
    If they find something that could be treated then and would get worse or even be fatal if not treated so promptly, surely it's unethical not to pass the information on to the patient and their GP?
    Doncaster, South Yorkshire. Soil type: sandy, well-drained
  • FireFire Posts: 19,096
    The info may not be processed attributed to individuals. The trial might not be set up like that.
  • ObelixxObelixx Posts: 30,090
    Such trials involve data collected on computers.  Computers can be programmed for data to remain anonymous to those conducting the research but also to send an alert to the person who may, unknowingly, have a pre-condition.

    It's a question of what the computer is told to do so is a matter - once again - of people having low expectations and low, or blinkered aims.   Any such data collection exercise can and should be used to improve individual and social health by preventing avoidable longterms disease and conditions, just like the heart/lung/breast/bowel screening programmes that have evolved in the last few decades.  
    Vendée - 20kms from Atlantic coast.
    "The price good men (and women) pay for indifference to public affairs is to be ruled by evil men (and women)."
    Plato
  • KT53KT53 Posts: 9,016
    I would be happy to know the results for anything which was treatable, but wouldn't want to know if it was something like dementia.
  • FireFire Posts: 19,096
    Computers can be programmed for data to remain anonymous to those conducting the research but also to send an alert to the person who may, unknowingly, have a pre-condition.

    It depends how trials are set up. If you working with hundreds of thousands of people it's not remotely straight forward to tell, counsel and advice people about their data. Large trials cost millions, just to set up, gather, process and correlate data. Dealing with inter-personal reprecussions is a whole other thing.

    The ME trial, for example aims to work with 25 000 people. They might well find genetic markers in certain samples but they don't have scope to tell participants - they make that very clear. The markers might be very useful to people like me, but I know I won't know. Just go in with your eyes open - clear comms.
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