Closed UK: DecodeME updates, was recruitment thread.

Trish said:
I don't think they could do that ethically without also providing genetic counselling which would be prohibitively expensive.
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Providing the raw data is not the same as interpreting it.

Why is ethical for labs to sell whole genome sequencing to retail customers without any "genetic counselling" then?
 
Andy said:
Great short interview with Chris on Radio 4, https://www.bbc.co.uk/sounds/play/m001byy7, interview starts at 48:36
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Really superb job by Chris Ponting there - I think the 'yuppie flu' comment was on a Radio Scotland (?) interview I heard yesterday, that included a PwME.

It's not easy to cope with an interview on the fly and I thought Chris did a really good job of getting the key points across. Very well done.
 
josepdelafuente said:
Yes, has been really great to hear people for the most part sticking to it. Chris did very well to bat away Aasmah Mir's "yuppie flu" comment. That definitely seems to be the best way to treat that stuff now - just don't give it oxygen!
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I think it was a bit of a missed opportunity to set the historical context of the level of prejudice and misinformation on the disease. Personally responding to that I would want to fix the timeline where the disease was named in the 50s and put the likely historical context to 100s of years and briefly touch on the level of prejudice the sufferers have undergone in the past 40 years of which Yuppie Flu is one such crime committed by the press and medicine against sufferers. Calling it a not useful characterisation and focussing on moving forward is also whitewashing the sins of the past. There was a correction to make on the origin of the condition at the very least if not to also address the prejudiced name the press and doctors gave it.
 
Snow Leopard said:
The part that I dislike most about DecodeME is that participants won't be provided with their own data once the study is complete.

If such data was provided, it would be a much stronger incentive to participate.
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Our answer to that point is
"If you take part in DecodeME, we won’t give you any information about your own individual genetic findings. This is because there are many practical and ethical issues that make it difficult to give personal DNA results to people who take part in research studies."
https://www.decodeme.org.uk/faqs/will-i-receive-my-dna-results/

Snow Leopard said:
Providing the raw data is not the same as interpreting it.

Why is ethical for labs to sell whole genome sequencing to retail customers without any "genetic counselling" then?
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Because they don't have to work within the same ethical frameworks.

The very short reason is that we do not have the funding to enable us to return the data, and we would not have been funded to do so if we had added that to the application.
 
BrightCandle said:
I think it was a bit of a missed opportunity to set the historical context of the level of prejudice and misinformation on the disease. Personally responding to that I would want to fix the timeline where the disease was named in the 50s and put the likely historical context to 100s of years and briefly touch on the level of prejudice the sufferers have undergone in the past 40 years of which Yuppie Flu is one such crime committed by the press and medicine against sufferers. Calling it a not useful characterisation and focussing on moving forward is also whitewashing the sins of the past. There was a correction to make on the origin of the condition at the very least if not to also address the prejudiced name the press and doctors gave it.
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In a ten minute interview, I thought that Jennie and Chris did well to set the context of the terrible effect that ME can have on those with it and their family and friends. They also talked about how neglected and lacking in understanding, treatment options and research it has been, although Jennie did talk briefly of her use of Hyperbaric Oxygen Therapy, which she felt helped her, which personally I would have prefered her not to. And, obviously, Chris talked about DecodeME and why we think it is important.

Then, in the last 20 secs of the interview, the term yuppie flu is brought up. In the few seconds he had left, Chris said "We need to look to the future, that's not the right description, looking to the future, Myalgic Encephalomyelitis is a term that we need to pay attention to, as a society, through the health system, and through research organisations", with the interview ending as soon as he finished. In the time that he had, I think he did the best he could.
 
Andy said:
As of 11am, 12th Sept, an email was sent to everybody who registered for updates, giving them early access to the full registration and questionnaire process. If you have not seen it, please check your spam folder.
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@Andy, there seem to be some people who thought they were registered and were waiting patiently and watching out, but haven't heard anything. My daughter and a number of the people she knows seem to have slipped off the email list lately. She has re-registered now, but I thought it worth mentioning that it is possible some people might be getting missed.
 
Andy said:
In a ten minute interview, I thought that Jennie and Chris did well to set the context of the terrible effect that ME can have on those with it and their family and friends. They also talked about how neglected and lacking in understanding, treatment options and research it has been, although Jennie did talk briefly of her use of Hyperbaric Oxygen Therapy, which she felt helped her, which personally I would have prefered her not to. And, obviously, Chris talked about DecodeME and why we think it is important.

Then, in the last 20 secs of the interview, the term yuppie flu is brought up. In the few seconds he had left, Chris said "We need to look to the future, that's not the right description, looking to the future, Myalgic Encephalomyelitis is a term that we need to pay attention to, as a society, through the health system, and through research organisations", with the interview ending as soon as he finished. In the time that he had, I think he did the best he could.
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Agree it should be all focused on the study and definitely Chris did a good job of bringing it back on topic. The journalist feeble attempt to spice it up with a bit of populist controversy but Chris didn’t bite. :thumbup:
 
Natalie said:
@Andy, there seem to be some people who thought they were registered and were waiting patiently and watching out, but haven't heard anything. My daughter and a number of the people she knows seem to have slipped off the email list lately. She has re-registered now, but I thought it worth mentioning that it is possible some people might be getting missed.
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Thanks Natalie. If people have not seen an email by now then I'm afraid it will have been lost in a dark corner of the internet somewhere, and we are discussing how we might address this moving forward.

In the meantime, if you are aware of anybody waiting to receive an email, please could you encourage them to visit https://www.decodeme.org.uk/portal/ and click on the "sign up" button. Anticipating a question that they might have, yes, they will have signed up for updates previously but now we need them to sign up to the recruitment process proper.
 
Trish said:
I don't think they could do that ethically without also providing genetic counselling which would be prohibitively expensive.
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It's not the case for another study called Viking2

https://www.ed.ac.uk/research/latest-research-news/study-seeks-people-with-northern-isles-ancestry

Future healthcare
For those living in the UK who volunteer to be part of the study, they can choose to have information on limited genetic results returned to them through the NHS. This information could be useful in terms of their future healthcare, including taking preventive actions to reduce the impact of health conditions.
 
Andy said:
Hi, thanks for taking part. Access to medical records, while something that would be 'nice to have' for analysis of the data, is secondary to being able to analyse the genetic material from the saliva samples donated. Please take the time you need to make your decision but we'd prefer by far that people agree to the parts of the study that they are happy with, rather than them potentially not take part at all due to being less than happy with one optional section of it.
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Thanks for clarifying this. The reason it made me pause for thought is that my NHS records contain a lot of personal information that has nothing to do with ME and I hadn't considered how I feel about somebody having access to it all. If it's just codes/data points though that's less of a concern.
 
Tia said:
Thanks for clarifying this. The reason it made me pause for thought is that my NHS records contain a lot of personal information that has nothing to do with ME and I hadn't considered how I feel about somebody having access to it all. If it's just codes/data points though that's less of a concern.
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I'm aware that I still owe you a full answer from your earlier query but in the interim, you can read what the Viking Genes study says about linking health records here, https://www.ed.ac.uk/viking/about-us/what-we-do/ehr-linkage (the relevance is that it is another GWAS conducted by the University of Edinburgh, and one of our team members, Dr Shona Kerr, is also part of the Viking Genes team).

On that page you can see an image that confirms that we would only receive codes and data points extracted from your record, not a copy of the whole thing. Hope this helps.
 
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