Hmm. I don’t think that you, the participant, would ever be made privy to the results.
At least, in my experience, that is the case. And I’m still angry about it after several years.
I took part once in something similar. Blood tests were done, along with a whole load of other things. Anyone looking at those blood tests would have been able to see that I had a serious problem. A problem that could cause me to have a stroke or a heart attack or worse.
But nobody relayed that information to me. I was a guinea pig. If I fell down dead, I was part of their observations.
Luckily, I had an accident with a knife. A wound that didn’t heal. A hand that turned black. After a week or two (in my usual “things either get better or they don’t” way), I went to the hospital. I was just a small step from disaster when my problem was picked up.
No, if you want to take part, take part, but remember you are just a statistic not a patient.
Apophthegm - a big word for a small thought. If you live in Derbyshire, as I do.
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. "We don't stop playing because we grow old; we grow old because we stop playing." - George Bernard Shaw
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. "We don't stop playing because we grow old; we grow old because we stop playing." - George Bernard Shaw
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.
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.
When I took part in the survey I was symptom-free. Healthy and energetic and feeling fine.
I probably didn’t read the small print, but as I thought that I was in perfect health why would I be thinking of needing any future feedback from the tests?
When I cut my finger, I was still unaware that there was anything wrong with me.
When my hand went black, I just thought it was an infection of some kind.
I had blood tests done at the hospital. Within minutes they were able to tell me that I had a bad problem. A problem that was there when I did the survey.
I am now taking daily aspirin tablets for life, chemotherapy tablets for life, and have pints of blood removed every now and then.
Cutting my hand was probably the only thing that saved my life.
Apophthegm - a big word for a small thought. If you live in Derbyshire, as I do.
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
B3
Posts: 26,541
Posts
In the sticks near Peterborough
At least, in my experience, that is the case. And I’m still angry about it after several years.
I took part once in something similar. Blood tests were done, along with a whole load of other things. Anyone looking at those blood tests would have been able to see that I had a serious problem. A problem that could cause me to have a stroke or a heart attack or worse.
But nobody relayed that information to me. I was a guinea pig. If I fell down dead, I was part of their observations.
Luckily, I had an accident with a knife. A wound that didn’t heal. A hand that turned black. After a week or two (in my usual “things either get better or they don’t” way), I went to the hospital. I was just a small step from disaster when my problem was picked up.
No, if you want to take part, take part, but remember you are just a statistic not a patient.
If you live in Derbyshire, as I do.
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.
"We don't stop playing because we grow old; we grow old because we stop playing." - George Bernard Shaw
You are anonymous. You are a statistic.
If you live in Derbyshire, as I do.
"We don't stop playing because we grow old; we grow old because we stop playing." - George Bernard Shaw
@Obelixx said
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.
I probably didn’t read the small print, but as I thought that I was in perfect health why would I be thinking of needing any future feedback from the tests?
When I cut my finger, I was still unaware that there was anything wrong with me.
When my hand went black, I just thought it was an infection of some kind.
I had blood tests done at the hospital. Within minutes they were able to tell me that I had a bad problem. A problem that was there when I did the survey.
I am now taking daily aspirin tablets for life, chemotherapy tablets for life, and have pints of blood removed every now and then.
Cutting my hand was probably the only thing that saved my life.
If you live in Derbyshire, as I do.