From what I understand from the article you can get limited feedback of genetic information if you request it. This is what I was asking about. Joining the survey and knowing that the information was available would be unsettling for me. "Volunteers will also be given the option of getting some of their results, including scores - based on genetic tests - of how at risk they are of common diseases."
I'm part of the Uk Biobank research programme, set up if I remember rightly in about 2012. There were just under 500,000 people who volunteered. We had lots of personal info collected and various tests were done. Over the years I've participated in various online questionaires on diet, exercise etc.
We were specifically told that we would not be informed of any of the test results but our GPs would be informed if they found evidence of life threatening diseases. This is a study for life and after death as you give permission for your samples to be used for research after your death. We were also told that all our visits to your GP and any hospital visits, test results etc would automatically be relayed to the research programme.
I was recently invited to take part in a whole day, whole body MRI scanning programme which to my great regret and shame I turned down because I'm claustrophobic and can't face going into a scanner at all.
Unfortunately what we weren't told is that some GP practices are not signed up to the UK Biobank research programme - and mine isn't, as I found out some time ago!
I'm still very pleased that I volunteered however, the results of various surveys are published from time to time and they do keep in touch with me.
I wonder why they are not expanding this existing research programme and were setting up a new one.
I think my dad had liver and kidney problems and probably had parkinsons. My mum had various dementias. I want to know what I am up against. I want my cousins to get a head start and gear their lives to being well.
On the one hand, I would want to know if I was developing something that was treatable at an early stage. On the other hand, I would want to know that I wouldn’t be excluded from taking out life insurance and the like. It’s bad enough getting holiday insurance cover, trying to ensure that you’ve mentioned all the relevant ailments, in case you forget one and they then refuse to pay out when needed!
Any clinical trial, where results are to be shared with participants, has to be run very differently, and is far more ethically complex, which is why it is usually not done.
How can you lie there and think of England When you don't even know who's in the team
Periodically Mrs Cotto sees a consultant geneticist and her blood/dna is being used in about 5 research projects looking at primary cancers. I seem to remember they said she would be contacted if there was revelatory information to share. I can definitely remember the clause that said should these studies result in finding cures for cancer she would have no entitlement to royalties from the discovery.
I took part in the 100,000 genome project. They took 100,000 people with potentially genetically caused conditions and sequenced all their genomes. 5 or 6 years later they informed individuals of their gene 'flaws'. For somebody with many usually hereditary conditions, I came out with no identifiable gene-caused problems. The data is still there though, and however many years in the future it takes they may yet be able to predict my glaucoma and diabetes (retro-predict?).
My understanding from the news report was that some immediate date such as cholesterol levels would be given to the participants but that the wider data would not. As @punkdoc says it depends on how the trial is set up. When I worked for the Blood service if we found anything untoward in a donor sample we informed their Doctor, however sometimes drug companies would ask for sample tubes we had finished with for large scale tests. These were completely anonymised.
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"Volunteers will also be given the option of getting some of their results, including scores - based on genetic tests - of how at risk they are of common diseases."
We were specifically told that we would not be informed of any of the test results but our GPs would be informed if they found evidence of life threatening diseases. This is a study for life and after death as you give permission for your samples to be used for research after your death. We were also told that all our visits to your GP and any hospital visits, test results etc would automatically be relayed to the research programme.
I was recently invited to take part in a whole day, whole body MRI scanning programme which to my great regret and shame I turned down because I'm claustrophobic and can't face going into a scanner at all.
Unfortunately what we weren't told is that some GP practices are not signed up to the UK Biobank research programme - and mine isn't, as I found out some time ago!
I'm still very pleased that I volunteered however, the results of various surveys are published from time to time and they do keep in touch with me.
I wonder why they are not expanding this existing research programme and were setting up a new one.
When you don't even know who's in the team
S.Yorkshire/Derbyshire border
For somebody with many usually hereditary conditions, I came out with no identifiable gene-caused problems.
The data is still there though, and however many years in the future it takes they may yet be able to predict my glaucoma and diabetes (retro-predict?).
When I worked for the Blood service if we found anything untoward in a donor sample we informed their Doctor, however sometimes drug companies would ask for sample tubes we had finished with for large scale tests. These were completely anonymised.