Experiences of participating in the 100,000 Genomes Project
Sample Storage in the 100,000 Genomes Project
The blood and tissue samples that are taken from people who are taking part in the 100,000 Genomes Project are stored securely by Genomics England at the National Institute for Health Research Biosample Centre in England.
The samples are stored in tubes which are labelled with a barcode, not with the name or other identifiable details of the person the sample was taken from. People we spoke to trusted that the samples were being kept in a secure and safe place by Genomics England. Lucy Z said, “It sounds like a fine secure process to me.”
Betty doesn’t know exactly where her samples are stored but she trusts in the “professionalism” of those running the project, and that the samples won’t be left to deteriorate.
Betty doesn’t know exactly where her samples are stored but she trusts in the “professionalism” of those running the project, and that the samples won’t be left to deteriorate.
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No I don’t actually dear, no. I do know.
Ok so do you think they might have explained to you and you forgot?
Do I need to know? That was my question. Do I need to know what happens? No.
As a patient participating in research yes.
I guess that I thought, from my understanding was that it was going elsewhere. It wasn’t remaining in the [city] area. It was going elsewhere to be checked. I’ve forgotten where. Was it North of here for some reason. I didn’t take that on board.
Yes there is a central, let’s say, place where all the data, all the samples are going to be kept.
Agency. Is kept.
And research is going to be conducted. I mean that is the, but it’s within the sort of NHS.
Yes I understood that it wasn’t going to be sent hither and yon and where it oughtn’t to be. It was being kept secure, you know, safe and purposeful.
Ok so that was explained to you. It was a central place where it would be stored securely?
Yes.
And sort of
I didn’t have to give it another thought. It was, for me it was sufficient that they’d said it would be taken care of and it was valuable, you know.
Ok so that’s how you felt?
That’s how I felt that it was
Confident that?
It would be, the right thing would be done with it yes.
Ok, ok.
But I understood also that, that at different times the blood samples could differ couldn’t they. I didn’t quite understand why that on that particular occasion they needed to take all of that because in another week or two or three it might have a different constituency, you know. I don’t suppose blood samples stay the same month after month, year after year. So you know I didn’t. Well it was enough for me to know that professional people were dealing with whatever was required.
Ok so that, sort of you were at ease with this?
[uh huh]
Ok. It seems to me that you don’t have any worries about data storage.
No I don’t.
No, ok.
I hope it lasts. I mean I understood that it would be in, kept in conditions where it wouldn’t deteriorate which where it would continue to be useful and so that was sufficient for me, yes. Oh I have said, trust [laugh]. Trust in professionalism and trust. I hope it’s not misplaced but I mean where could it go you know.
Grandma Football “presumes” the samples are kept in a safe place and thinks its just “another bit” of our data that’s stored somewhere.
Grandma Football “presumes” the samples are kept in a safe place and thinks its just “another bit” of our data that’s stored somewhere.
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Well it won’t be attributed to me. It will just have it’s own number. So that’s fine and it will just be kept wherever you keep your data. You know. On a computer somewhere I presume.
Yeah.
In a safe place I would presume.
Yeah. Ok so and the sharing is the. So how do you feel about..
I think we’ve got that all over the country, well already haven’t we. Lots of different bits of information are stored on us everywhere. So what’s another bit [ha ha].
Ok.
It’s, you know normal.
Ok. And how does it make you feel that you are anonymised, you are just a reference number?
No I felt good about that. Yeah I think that’s how it should be. You know, I don’t want to be identified as a person who is giving this research because it’s not really about me. It’s about the outcomes. So no I don’t mind being a number for that.
Keeping the samples secure in the future so they aren’t used for the wrong reasons is important to Lucy Y. She believes a lot of money has been spent to securely store the samples for the Genomes project.
Keeping the samples secure in the future so they aren’t used for the wrong reasons is important to Lucy Y. She believes a lot of money has been spent to securely store the samples for the Genomes project.
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Yeah. Yeah.
How do you think that your - where do you think your samples are at the moment?
I can - oh, this sounds weird. I can imagine them being in like a big fridge-freezer system, being held in little test-tube bottles, and I have a little row for my little row of test-tubes. And hopefully it's a high security complex. That's the only thing that does worry me, is… this whole what happens, future-future? Not necessarily now, because we haven't got the technology. In the future, what technology are we going to have, and what are we going to be able to do with the DNA? That's the only concerns for me, is in the future. Because it could be used for the wrong purposes. So that's why I hope it's held somewhere safely. Because, you know, a lot of the - unfortunately, things that they use in war, they release diseases and that kind of thing. You know? Nasty diseases. In an aggressive horrible manner. So therefore if you've got a collection of people with rare diseases and you've got all of their DNA stored somewhere, that's just something I'm concerned - which is why I did have a nosey, and it did say it had, had to spend an awful lot of money building somewhere to be able to store it all.
Linda thinks that her sample is stored a de-identified somewhere where it can be used in the future and passed to others.
Linda thinks that her sample is stored a de-identified somewhere where it can be used in the future and passed to others.
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Well that will be kept in a bank and used for report-. I gather that it will be used at other times, not necessarily now but in future research they will pull on those, those part of the back and it will be used in whatever way needed. So and the data obviously to be able to use the information to pass between other people which it’s got to be hasn’t it to, to do the research. You’ve got to be able to talk and pass other information to other areas and everything. So
Ok. And so you were obviously informed that it will be anonymised (de-identified) that you will be ___?
Exactly it’s all anonymous. There’s no. so as far as I am concerned that’s ok.
Ok. So you
All I know is I’m a number [laugh]. That’s fine.
Most probably a letter and a number.
Yeah a letter and a number yes exactly [laugh]. That’s fine.
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