Experiences of participating in the 100,000 Genomes Project
Getting information about the 100,000 Genomes Project
In February 2017, in response to participants’ and healthcare professional’s feedback (through a national evaluation) Genomics England carried out a major update of the written information available to participants and was awarded a Crystal Mark from the Plain English Campaign. You can see current advice and information about participating in the project by clicking on the link in our Resources page.
Depending on when they were asked to take part in the Project, the people we spoke to may have received earlier versions of the leaflets, information sheets and consent forms, and so the comments you see below may relate to versions that have since have been improved.
People often had very little knowledge about the 100,000 Genomes project when they were first invited to participate. Some felt it would have be useful to have more publicity for the project so that people are aware of it when it is first mentioned to them by health practitioners.
Edward: I think - I mean, if I had to say anything, it would just be more public awareness. People trust more things they're already aware of. I, I didn't even know about it until I was asked about it. You know, I was more than happy to take part in something that would benefit research. But I think it would be good if people generally - even if they're not going to participate - knew that it existed before they were potentially asked to sign up for it.
Sheila: Mmm.
Edward: Perhaps a little bit more presence. Even if it's just outreach to news media, or a newspaper, just so people know that it exists.
Sheila: Or even in hospitals –
Edward: Sort of gets rid of –
Sheila: - you know, if you go, you're aware that it's going on. You may not be invited, but you know it's there. Because if you don't really know about it -
Edward: But then it sounds like some sort of shadowy secretive organisation within an organisation. It just gets rid of that kind of mystique, if people know about it.
Sheila: Yeah.
People wanted to know different things including:
Sheila and Edward think people the project needs to have a bit more “presence” and public awareness. People trust things they have heard about.
Sheila and Edward think people the project needs to have a bit more “presence” and public awareness. People trust things they have heard about.
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Sheila: Mmm.
Edward: Perhaps a little bit more presence. Even if it's just outreach to news media, or a newspaper, just so people know that it exists.
Sheila: Or even in hospitals –
Edward: Sort of gets rid of –
Sheila: - you know, if you go, you're aware that it's going on. You may not be invited, but you know it's there. Because if you don't really know about it -
Edward: But then it sounds like some sort of shadowy secretive organisation within an organisation. It just gets rid of that kind of mystique, if people know about it.
Sheila: Yeah.
- What taking part would involve for them personally
- How their data would be used and stored now and in the future
- How soon they would get the results, and
- What, if anything, the results would mean for them
People gained information by looking at the information pack (which includes a Participant Information Sheet, relevant consent form and optional materials such as an ‘introduction to the Project’ leaflet), asking questions and accessing information online.
People were either given an information pack by a health professional for them to take away and read or it was sent to them at home. People usually had the opportunity to discuss the information they were given or ask questions and some had the leaflet explained to them in detail. But not everyone felt they needed a lot of information about the project.
What did you understand by the, all the information that you were given? Or this leaflet?
Well to be honest with you –
Or what did you think of it?
I didn’t really understand a lot of it, to be honest with you [laughing]. But that - that’s all I can say about it. You know?
She - the person was there at the hospital, and she said, "Do you mind coming with me for a blood sample?" And I said no. No.
And did she explain then about them taking a part of the tumour? Was it her that explained that?
Yes. And the doctor who told me all about it. The doctor, one of the doctors I think is in on it there, [doctor’s name], is it [doctor’s name]?
Right, okay.
Yes.
Yeah.
Very nice young man, he is.
Right. And what did he say to you? What did he sort of explain?
He explained it, he. Well, he went through much of what you said. You know, the same. He was very, very good. Took quite a while to do it, yeah.
Ah, okay.
He was very, very good.
Yes.
[Doctor].That’s it, yes.
Ah okay. Yes.
Mmm.
So he, you felt he explained things well about the 100,000 Genomes Project?
Yes. Yes.
Yeah.
Yes. I think he’s part of the project.
Oh is he? Oh right, okay.
Yes, he’s - he’s part of it, I think.
Oh okay.
And this lady, the Chinese lady as well, she is.
Yes.
At the [name] hospital.
Ah, okay.
Yes.
And so did they both talk to you together, when they asked you to take part?
I think I - they might’ve done, at one stage.
Yeah.
Yeah.
And you don’t remember what they sort of said, or? What, how they explained the project?
No, no.
Yeah.
No. He did tell me, he said - I said, "Well if it’ll help someone else." And he said, "Well it might even help you, as well. It might help you with your treatment."
Yes.
So what that meant, I don’t know.
Yes, I was going to ask - what do you understand by that? [Laughing.]
[Laughing] yes, so.
Yeah.
I don’t know.
Asking questions to health professionals
Two medical professionals spoke to Pauline about the project and explained it to her. She didn’t understand some of what was said but was happy to help others.
Two medical professionals spoke to Pauline about the project and explained it to her. She didn’t understand some of what was said but was happy to help others.
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Well to be honest with you –
Or what did you think of it?
I didn’t really understand a lot of it, to be honest with you [laughing]. But that - that’s all I can say about it. You know?
She - the person was there at the hospital, and she said, "Do you mind coming with me for a blood sample?" And I said no. No.
And did she explain then about them taking a part of the tumour? Was it her that explained that?
Yes. And the doctor who told me all about it. The doctor, one of the doctors I think is in on it there, [doctor’s name], is it [doctor’s name]?
Right, okay.
Yes.
Yeah.
Very nice young man, he is.
Right. And what did he say to you? What did he sort of explain?
He explained it, he. Well, he went through much of what you said. You know, the same. He was very, very good. Took quite a while to do it, yeah.
Ah, okay.
He was very, very good.
Yes.
[Doctor].That’s it, yes.
Ah okay. Yes.
Mmm.
So he, you felt he explained things well about the 100,000 Genomes Project?
Yes. Yes.
Yeah.
Yes. I think he’s part of the project.
Oh is he? Oh right, okay.
Yes, he’s - he’s part of it, I think.
Oh okay.
And this lady, the Chinese lady as well, she is.
Yes.
At the [name] hospital.
Ah, okay.
Yes.
And so did they both talk to you together, when they asked you to take part?
I think I - they might’ve done, at one stage.
Yeah.
Yeah.
And you don’t remember what they sort of said, or? What, how they explained the project?
No, no.
Yeah.
No. He did tell me, he said - I said, "Well if it’ll help someone else." And he said, "Well it might even help you, as well. It might help you with your treatment."
Yes.
So what that meant, I don’t know.
Yes, I was going to ask - what do you understand by that? [Laughing.]
[Laughing] yes, so.
Yeah.
I don’t know.
Some asked questions when they were invited to participate.
*Text altered for the website.
While I was waiting to go and have my pre-meds tests, I had a nurse come up to me and ask me if I would be interested in the genome project. Not knowing what it entailed, I said that - you know - I didn't want to go through any trial drugs, and she assured me that no, there wouldn't any of that, it was purely - you know - to have some bloods taken, and experiences of, of treatments, really. And so I said yes, I would. If it helps someone else along the line, that's what we have to do.
Did she explain to you what the project was about?
Very little. As I say, she didn't have a lot of time, no. Because I was literally going through… she called me. And then within a very short time, the nurse came out to call me to go and have my ECG and other, other checks – ready for the operation. So, it was very much a - She, she did it very quietly, because obviously there were other patients in the waiting room. The waiting room was very small, but adequate for our needs. And we literally stood round the corner, like a couple of spies, really. You know, talking - talking quietly to each other. And she just said that there was an information pack, she said it was a research project. And as soon as I heard that, there was no treatments involved, I was quite happy to, to help you.
Well I was just waiting to go in for my operation to have my right breast removed, and a lady popped up before me and said would I agree to take in this study. Take part in this study. And I said as long as it doesn’t involve needles I’d be delighted to. She said there will be needles, but that’ll all be done when you’re having your operation. I will take samples and blood, and things. I said that would be absolutely fine, I’m very happy to take part. So I signed the form, and it all went on when I had my operation, and I knew nothing about it.
Yeah. And what did you understand to be the 100,000 Genomes Project?
Well they are collecting bits and pieces from everybody that they can, to study. And they hope that their studying will - studying the DNA will reveal things like rare diseases, diseases that are passed down through generations in the family. And why they’re being passed down and what they can do about it. Which strikes me as a very, very valuable thing to do.
I mean they were happy to discuss any questions that we had. So we discussed a little bit about the commercial aspects of the study. And who would have access to the information, and what safeguards were in place. And certainly we wanted to know - particularly if it went outside the UK - we were very interested in how that information would go, and what kind of safeguards are in place once you leave the UK and our laws here. And they were very good at answering questions for us. They seemed very knowledgeable about the study.
But I think we were, we were really - we don’t mind companies having access to the data if it will help at all. But we just wanted to be sure that it was very, very secure, that nobody could trace back who we were. And also that it wouldn’t be used - I think certainly my big concern was that it wouldn’t be used to ostracise or, you know - insurance datas and making - if you’d ever tested for this that or the other. That was our big concern. Actually are we going to have to say we’ve been involved in the study? And is that going to impact on insurance in the future? That that was one of our big questions. Because it’s a concern. We’ve all watched the sci-fi movies and Gattaca and the like, and you think actually are we going to start making decisions based on people's DNA code? So that was one of our big concerns, I think.
Yes and how do you feel they addressed those concerns? What did they sort of say about that?
They, they tried to reassure us I think. And tell us that you know - there certainly is nothing like that in the pipeline, there’s - they’re not allowed to use that insurance. We don’t have to say that we’ve been involved in the study at all.
Leaflets and other paperwork
Vanessa was invited to take part by a nurse when she was waiting for an appointment. She only wanted to know if participating would involve taking any trial drugs. The nurse explained that it wouldn’t.
Vanessa was invited to take part by a nurse when she was waiting for an appointment. She only wanted to know if participating would involve taking any trial drugs. The nurse explained that it wouldn’t.
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While I was waiting to go and have my pre-meds tests, I had a nurse come up to me and ask me if I would be interested in the genome project. Not knowing what it entailed, I said that - you know - I didn't want to go through any trial drugs, and she assured me that no, there wouldn't any of that, it was purely - you know - to have some bloods taken, and experiences of, of treatments, really. And so I said yes, I would. If it helps someone else along the line, that's what we have to do.
Did she explain to you what the project was about?
Very little. As I say, she didn't have a lot of time, no. Because I was literally going through… she called me. And then within a very short time, the nurse came out to call me to go and have my ECG and other, other checks – ready for the operation. So, it was very much a - She, she did it very quietly, because obviously there were other patients in the waiting room. The waiting room was very small, but adequate for our needs. And we literally stood round the corner, like a couple of spies, really. You know, talking - talking quietly to each other. And she just said that there was an information pack, she said it was a research project. And as soon as I heard that, there was no treatments involved, I was quite happy to, to help you.
Pam wanted to know if participating would “involve needles”. The health professional who invited her to take part told her that blood would be taken during her operation and Pam agreed straight away.
Pam wanted to know if participating would “involve needles”. The health professional who invited her to take part told her that blood would be taken during her operation and Pam agreed straight away.
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Yeah. And what did you understand to be the 100,000 Genomes Project?
Well they are collecting bits and pieces from everybody that they can, to study. And they hope that their studying will - studying the DNA will reveal things like rare diseases, diseases that are passed down through generations in the family. And why they’re being passed down and what they can do about it. Which strikes me as a very, very valuable thing to do.
Emma and her husband want to know that companies couldn’t trace their results back to them and that they didn’t have to disclose results to insurance companies. They felt reassured by the staff who were very knowledgeable about the study.
Emma and her husband want to know that companies couldn’t trace their results back to them and that they didn’t have to disclose results to insurance companies. They felt reassured by the staff who were very knowledgeable about the study.
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But I think we were, we were really - we don’t mind companies having access to the data if it will help at all. But we just wanted to be sure that it was very, very secure, that nobody could trace back who we were. And also that it wouldn’t be used - I think certainly my big concern was that it wouldn’t be used to ostracise or, you know - insurance datas and making - if you’d ever tested for this that or the other. That was our big concern. Actually are we going to have to say we’ve been involved in the study? And is that going to impact on insurance in the future? That that was one of our big questions. Because it’s a concern. We’ve all watched the sci-fi movies and Gattaca and the like, and you think actually are we going to start making decisions based on people's DNA code? So that was one of our big concerns, I think.
Yes and how do you feel they addressed those concerns? What did they sort of say about that?
They, they tried to reassure us I think. And tell us that you know - there certainly is nothing like that in the pipeline, there’s - they’re not allowed to use that insurance. We don’t have to say that we’ve been involved in the study at all.
People received written information about the 100,000 Genomes project when they were invited to participate and some read it in detail and discussed it with family members before deciding whether to take part in the project. The written information covers a range of questions people might have including what the aims of the project are, what a genome is, what is involved in taking part, what results people might get and who looks at the data. There are versions of the written information leaflet suitable for children (6-10 year olds) and young people (11-15 year olds) as well as different formats for those who are visually impaired (large print) and those with learning difficulties (easy-read).
Genetics is a complex subject and, for those with no background knowledge of medical research or genetics and who were hearing about the project for the first time, it could be a lot to take in. Even those who understood genetics could find the written information they were given very detailed. Lucy Y found it “mind boggling” and felt there was a “huge amount to take on board” so she read it a few times. Others who were invited to participate around the time they had been diagnosed with cancer also found it a difficult time to take all the information in. Most people got more information from having the leaflet explained to them than from reading it themselves.
Well, I think that a lot of people will be given that leaflet and they won’t bother reading it. And they’ll just go home and put it on the table and they’ll just forget all about it. And because they’ve not read it and they don’t understand it, they just say, “Well, no” they wouldn’t bother. Because I sat with a lady that said, that actually said that to me, that, you know, she said that, “Well, I didn’t bother.” She says, “Cos I couldn’t be bothered to s-, read that leaflet and I weren’t, didn’t understand it anyway.” So-
So she was also invited to join, to take part?
Yeah, but she didn’t because she didn’t understand it.
Okay.
And if you read the leaflet, you know, I mean it’s not a bad leaflet but I don’t think they un-, I don’t think it’s worded very well. You know, I think it needs to be in plainer English really.
Okay. So it’s difficult, some of the wording? Okay.
Yeah. I mean not everybody is, you know, as, as intelligent as, as probably me. You know what I mean? You know, but I think word of mouth’s better than just you being given a leaflet.
Okay. So you would have preferred more explanation with people talking to you about what it’s all about?
I mean when the ladies came here to talk to me about it after I’d decided to join, they, that was very good cos they did explain it. But I think that you want explaining it right from the off. Because if you’re not explained it right from when they ask you, because you’ve got all this cancer going on and everything else, you think, “Oh, you can’t be bothering with that.” You know what I mean?
Yeah.
You know, so I think if it were explained to you, if they asked you about it and then they probably took your n-, and somebody explained what it was, I think a lot more people would be happier to join it. You know what I mean?
The actual materials that are sent out, the information sheet it’s all very jargony and it’s all very, it’s worded like a lawyer and it’s difficult to get your head around first read and it’s quite, it’s quite, quite a lot to read. So I think that could be sort of dumbed down a little bit. It’s the way it’s worded I think needs to be looked at because it’s not for, for everyone. But they did a good job at, you know, talking us through each, each bit and so we made sure we definitely understood what they were saying.
Heather: The booklet that she sent was just basically saying what she would do with the information, and which information she would take. Didn’t it? So, it was saying that they were going to look for the connection between the genes, between me and you, and me and my Dad and see if there was any differences and similarities. And all the different things that they could test for. So they were also going to look for, if I could pass it on to children and things like that. And it just explained what they would, could look for, and what they would do, and how long the process would take. But I remember it talking a lot about how you might not get any results from it, and it might just advance but you might not get a definite answer, but I think, we were quite aware of that anyway.
Julie: I think we wanted more information about how they were going to do it.
Heather: Yeah.
Julie: Rather than how it would affect us, and what could happen. We were more interested in the –
Heather: Yeah.
Julie: - mechanics of what they were actually going to do. I think, and when they sent us the additional information, there was quite a lot of it. So it was quite a big bulky document. And we all had busy lives, and sitting down and putting a lot of time and effort into reading it all. Although we did between us, I’m fairly sure we did read it all. But it was sort of was one extreme to the other. So, sort of overly basic on the, with the basic form, and then this really thick bulky form full of technical terms.
However, several people, including Birgit and Betty, thought the information leaflets given about the project were very clear. Linda said it was “pretty straightforward”.
They, I mean it was up to me to read the. I had time in the hospital on that particular day to go through the, the yellow leaflet thing. I think it was like this. And I got a copy which I brought home and understand. So they just did the, what they ought to have done I suppose but I didn’t get any more than I’ve got in written project things here. I understood it all at the time.
Ok was is helpful?
Oh yes, yes. I appreciated it all. I enjoy reading so I enjoyed reading it [chuckle]. Right now without my spectacles on I can’t see it properly but I know that I took a responsible attitude to it. I was, yeah.
Ok. Did you have any questions after you finished reading it?
No I can’t think that I did. If you can give me a second or two I might just glance that something might jump out at me. Yes I think did I say, was this worldwide or Europe-wide? I can’t remember the answer. Yes. Other findings - Yes about family members. Yes I understand that if there was something coming back to me from this future information thing that I can share it with my family members. And say to them, “Look this is what they have found out.” They, I don’t know who they are but they can find this about me. This is something I can pass on to you to be careful about or to help you to. For example my youngest daughter now 56 has started to whether it’s fashion or not I don’t know, to do gluten-free because she’s had stomach problem. And she’s been checked. She’s had a colonoscopy recently and I think that well anything that comes back to me from my gene project could probably help [Daughter] if I say to her. “Look this has come back. This is probably what you are suffering from.” You know. To
Ultimately, most people we spoke to understood enough about the project to think it was worthwhile. Some people didn’t feel the need to read the leaflet in detail and had trust in the process.
Now how did you find the information they gave you about the Genome Project.
It was fairly complex but in truth, the detail I thought, you know you are filling out these things and I understand why you have to answer all of these questions because of they’re protecting data and protecting personal information and so on. But I would just scan them I think [name] and know that somebody had put that together thinking that’s, no this is important. It has to be done so who am I to waste their time. I just signed it and say let’s get on to the main important part of the work.
So when you say complex you said there was too much information you mean?
There was. It was technical yeah it was quite technical really being used to technical language and looking at how you protect data and how you protect personal information. It wasn’t surprise to me that so much had to go through. Of course when you’re talking about intimate sort of body parts and parts of, you know surgery and parts of you being, you know, researched to do that then quite rightly professional are protective over that and protecting themselves as well. But if I see you want somebody coming back and tell you to do that.
And did you, was the information helpful?
It was how …. It was a need-to-do thing. It has to be done. It’s part of the process. Was it helpful? Well, it tells me what was going on but I think I knew the reason why it was being done so that wasn’t a difficult choice for me to make.
Ok so apart from being sort of useful did you find that you need more information or particular information about this project?
Not, not on a personal level. I would respect the fact that you are medical professionals. You’re engaged in a project that’s been approved by the [name] Hospital in [city]. And so people far more important than me would have thought that this was a pretty good idea to do .I don’t, I can’t imagine for a minute some people will say, “Oh just go and do this because it will take a bit of time to take that.” So I don’t think that comes in to it at all. It’s a bona fide medical research project and it deserves the support, one you get the support you’re not going to be able to learn from it are you.
Ok. It’s something that I will be asking as we go along. Is there anything regarding information that could be improved?
Right. Well technically I wouldn’t know I don’t think because of the nature of the sophisticated medical and research that’s taking place but I think you were, you were sharing the, your colleague was sharing enough information to make the whole process secure for me, for you and for future well-being or what eve is going to be found. The overwhelming motivation of course is that if there’s something within my sort of makeup, my, DNA make up whatever, gene whatever that can be used to secure my future families to have then that’s a very good thing to do.
No I’m going to ask you a question because I know that you come from the teaching profession and education profession, this information that is given to the public do you think that the style or the language is accessible for everybody?
No I wouldn’t have thought so. You would have to have a reasonable level of understanding to be able to grasp the technical nature of it all. But I think the concept is there. I do think the over-riding principles behind your, what your work is are easier to understand than the, the minutia of the detail. But I understand why that detail has to be there. I think most people would trust medical professionals. I do feel, you know, that we need to trust each other a little bit more.
Had you heard about the 100,000 Genomes Project?
I hadn't, no. Not until the lady said - you know - this is it, read all the bits and pieces there. And again, you know, if I'm going to help, let's see what we can do.
And so who - When were you first told about it? Was this on the Friday?
No, it was - this was on the pre-op, which was the - probably the Friday before. Or week or so before. Mmm.
And can you talk me through what happened?
Well, I presume it was a doctor, but - you know - asked me if I was, you know, prepared to look at it. And I read through the information there. And thought, you know, again - let's do it. And then they had your little envelope sealed, and said "You look at that when you get home." Which I read through, and again - you know - if it's going to be any help, see what we can do.
So the information - was there lots of information? Was it easy to understand?
I'm not too sure that I took much of it, took too much of it in, actually [laugh]. Again, it was, you know - if it's going to help, let's got on with it.
And did she explain anything to you?
Yes. She explained all the bits and pieces, what I'd be doing. You know, if you wanted to pull out any time, you know, you do it, and the onus is on you to decide to carry on or stop.
A few people wanted more information and some looked online for information after reading the leaflet.
Did you feel that you need more information at that?
No I didn’t. I was quite happy. I felt that it was explained to me quite clearly and I felt quite happy with that. It was only afterwards I knew that this would happen we, at some point but it was just like thinking, oh, you just want to know things really. So you read, you know, I did read up a little bit more about it and because then when you go for your pre-op it’s there and everything. And you hear things just recently on the news about different things so it’s very much more of, I’ve heard more about it probably since I’ve gone through. So yeah.
And have you seen the website they have?
No. I haven’t.
Ok
I didn’t know.
Did they mention it to you or did they or did you? And all the information did it come as another bit of information about the website?
No I didn’t really know much about the website at all. I haven’t looked. I’ve read about it on, I’ve looked it up on my and that and sort of read a little bit about it but not
On the website.
Not
Ok so you have Googled something?
Yes I have. Yes I’ve Googled some more information about it and everything.
I read about it. I, when I came home I actually read about it. You, we di-, you didn’t actually have to sign the form there and then. You had to bring it back when you went for your pre-assessment. And so they gave me information, written information, which, you know, I went home and looked at. But I also looked it up on the internet to find out what actually it was. And I found it really worthwhile and really interesting actually.
Okay. When you said you looked on, on the internet, were you looking at the website, any website?
I was just looking generally at the genomes project, the 100,000 Genomes Project and what we were trying to do as a country for people sort of that come after us. Sort of what it’s trying to achieve.
It wasn’t a huge amount of information. I think it was about two or three pages. Certainly for us as adults to read.
Yeah.
And as I say, we wanted to find out a little bit more. So we Googled the study. But there wasn’t actually a huge amount on it. There’s a lot of bits on the internet about kind of the study, and when it’s going to report and what it’s going to do. But actually there was very little first-hand evidence of people who’ve been through the study themselves, about - you know - actually what was involved, what blood samples would be taken, could you do anything else with them? That information just wasn’t there for us at the time.
So you looked on mainly - was it Genomics England, that was mainly their website, and did you look at any of the -
Yeah that was the main places. I mean obviously there are bits on internet forums for special needs children, and bits. But yeah, I think you have to be quite careful about what information you pick, because obviously you can’t tell the validity of anything like that. So we have to be - we have to be careful. And certainly I like to make sure the evidence I’m reading is good quality evidence. And yeah, there was some on the genomics, but almost that was little bit too much for us. There was nothing for people going through it at all. That that information just wasn’t there for us.
Yes, so you would have liked to see more of that, yeah.
Mmm, definitely. Mmm.
So we were invited to meet the team over at [hospital]. Which is our local genetics centre. And I think we were both quite surprised actually, by what we encountered. I think we thought it was you know, it were run by Genomics England and - I don’t know, I think we were expecting shiny and new. And it really wasn’t at all, actually [laughing]. We, we met them in our local outpatients department of our centre at [place]. And there was a little room that we went into with two research nurses. Who kind of talked us through the information again. But I think we were thinking there would be a lot more information. Because certainly from the original information that we got, it was - this would be your opportunity to ask questions, and you will be given more information. And actually, we found that we weren’t, really. There wasn’t a great deal of information that we hadn’t already had. Yeah, very difficult.
Information online about the 100,000 Genomes Project
Kath thinks the leaflet could be in “plainer English” and said it is better if you have someone to explain it to you. She thinks it puts people off signing up for the project.
Kath thinks the leaflet could be in “plainer English” and said it is better if you have someone to explain it to you. She thinks it puts people off signing up for the project.
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So she was also invited to join, to take part?
Yeah, but she didn’t because she didn’t understand it.
Okay.
And if you read the leaflet, you know, I mean it’s not a bad leaflet but I don’t think they un-, I don’t think it’s worded very well. You know, I think it needs to be in plainer English really.
Okay. So it’s difficult, some of the wording? Okay.
Yeah. I mean not everybody is, you know, as, as intelligent as, as probably me. You know what I mean? You know, but I think word of mouth’s better than just you being given a leaflet.
Okay. So you would have preferred more explanation with people talking to you about what it’s all about?
I mean when the ladies came here to talk to me about it after I’d decided to join, they, that was very good cos they did explain it. But I think that you want explaining it right from the off. Because if you’re not explained it right from when they ask you, because you’ve got all this cancer going on and everything else, you think, “Oh, you can’t be bothering with that.” You know what I mean?
Yeah.
You know, so I think if it were explained to you, if they asked you about it and then they probably took your n-, and somebody explained what it was, I think a lot more people would be happier to join it. You know what I mean?
Jenny thinks the information leaflet and consent form would be better if it was written in layman’s terms. But the health professional who went through it with her did a “good job” of explaining it.
Jenny thinks the information leaflet and consent form would be better if it was written in layman’s terms. But the health professional who went through it with her did a “good job” of explaining it.
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Heather and Julie describe a booklet that was given to them which was “bulky” and “technical”. It focused more on how the research would affect them rather than how it would be carried out.
Heather and Julie describe a booklet that was given to them which was “bulky” and “technical”. It focused more on how the research would affect them rather than how it would be carried out.
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Julie: I think we wanted more information about how they were going to do it.
Heather: Yeah.
Julie: Rather than how it would affect us, and what could happen. We were more interested in the –
Heather: Yeah.
Julie: - mechanics of what they were actually going to do. I think, and when they sent us the additional information, there was quite a lot of it. So it was quite a big bulky document. And we all had busy lives, and sitting down and putting a lot of time and effort into reading it all. Although we did between us, I’m fairly sure we did read it all. But it was sort of was one extreme to the other. So, sort of overly basic on the, with the basic form, and then this really thick bulky form full of technical terms.
Betty enjoyed reading the leaflet and explains why she found it useful.
Betty enjoyed reading the leaflet and explains why she found it useful.
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Ok was is helpful?
Oh yes, yes. I appreciated it all. I enjoy reading so I enjoyed reading it [chuckle]. Right now without my spectacles on I can’t see it properly but I know that I took a responsible attitude to it. I was, yeah.
Ok. Did you have any questions after you finished reading it?
No I can’t think that I did. If you can give me a second or two I might just glance that something might jump out at me. Yes I think did I say, was this worldwide or Europe-wide? I can’t remember the answer. Yes. Other findings - Yes about family members. Yes I understand that if there was something coming back to me from this future information thing that I can share it with my family members. And say to them, “Look this is what they have found out.” They, I don’t know who they are but they can find this about me. This is something I can pass on to you to be careful about or to help you to. For example my youngest daughter now 56 has started to whether it’s fashion or not I don’t know, to do gluten-free because she’s had stomach problem. And she’s been checked. She’s had a colonoscopy recently and I think that well anything that comes back to me from my gene project could probably help [Daughter] if I say to her. “Look this has come back. This is probably what you are suffering from.” You know. To
Bart found the part about data protection “quite technical” but wasn’t surprised and thought it was appropriate given the subject matter.
Bart found the part about data protection “quite technical” but wasn’t surprised and thought it was appropriate given the subject matter.
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It was fairly complex but in truth, the detail I thought, you know you are filling out these things and I understand why you have to answer all of these questions because of they’re protecting data and protecting personal information and so on. But I would just scan them I think [name] and know that somebody had put that together thinking that’s, no this is important. It has to be done so who am I to waste their time. I just signed it and say let’s get on to the main important part of the work.
So when you say complex you said there was too much information you mean?
There was. It was technical yeah it was quite technical really being used to technical language and looking at how you protect data and how you protect personal information. It wasn’t surprise to me that so much had to go through. Of course when you’re talking about intimate sort of body parts and parts of, you know surgery and parts of you being, you know, researched to do that then quite rightly professional are protective over that and protecting themselves as well. But if I see you want somebody coming back and tell you to do that.
And did you, was the information helpful?
It was how …. It was a need-to-do thing. It has to be done. It’s part of the process. Was it helpful? Well, it tells me what was going on but I think I knew the reason why it was being done so that wasn’t a difficult choice for me to make.
Ok so apart from being sort of useful did you find that you need more information or particular information about this project?
Not, not on a personal level. I would respect the fact that you are medical professionals. You’re engaged in a project that’s been approved by the [name] Hospital in [city]. And so people far more important than me would have thought that this was a pretty good idea to do .I don’t, I can’t imagine for a minute some people will say, “Oh just go and do this because it will take a bit of time to take that.” So I don’t think that comes in to it at all. It’s a bona fide medical research project and it deserves the support, one you get the support you’re not going to be able to learn from it are you.
Ok. It’s something that I will be asking as we go along. Is there anything regarding information that could be improved?
Right. Well technically I wouldn’t know I don’t think because of the nature of the sophisticated medical and research that’s taking place but I think you were, you were sharing the, your colleague was sharing enough information to make the whole process secure for me, for you and for future well-being or what eve is going to be found. The overwhelming motivation of course is that if there’s something within my sort of makeup, my, DNA make up whatever, gene whatever that can be used to secure my future families to have then that’s a very good thing to do.
No I’m going to ask you a question because I know that you come from the teaching profession and education profession, this information that is given to the public do you think that the style or the language is accessible for everybody?
No I wouldn’t have thought so. You would have to have a reasonable level of understanding to be able to grasp the technical nature of it all. But I think the concept is there. I do think the over-riding principles behind your, what your work is are easier to understand than the, the minutia of the detail. But I understand why that detail has to be there. I think most people would trust medical professionals. I do feel, you know, that we need to trust each other a little bit more.
Arthur was told all about the project at his pre-op assessment and thought “let’s do it”. He took an information pack home with him but didn’t take too much of it in.
Arthur was told all about the project at his pre-op assessment and thought “let’s do it”. He took an information pack home with him but didn’t take too much of it in.
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I hadn't, no. Not until the lady said - you know - this is it, read all the bits and pieces there. And again, you know, if I'm going to help, let's see what we can do.
And so who - When were you first told about it? Was this on the Friday?
No, it was - this was on the pre-op, which was the - probably the Friday before. Or week or so before. Mmm.
And can you talk me through what happened?
Well, I presume it was a doctor, but - you know - asked me if I was, you know, prepared to look at it. And I read through the information there. And thought, you know, again - let's do it. And then they had your little envelope sealed, and said "You look at that when you get home." Which I read through, and again - you know - if it's going to be any help, see what we can do.
So the information - was there lots of information? Was it easy to understand?
I'm not too sure that I took much of it, took too much of it in, actually [laugh]. Again, it was, you know - if it's going to help, let's got on with it.
And did she explain anything to you?
Yes. She explained all the bits and pieces, what I'd be doing. You know, if you wanted to pull out any time, you know, you do it, and the onus is on you to decide to carry on or stop.
After reading the information Linda started to try and find out more about the project.
After reading the information Linda started to try and find out more about the project.
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No I didn’t. I was quite happy. I felt that it was explained to me quite clearly and I felt quite happy with that. It was only afterwards I knew that this would happen we, at some point but it was just like thinking, oh, you just want to know things really. So you read, you know, I did read up a little bit more about it and because then when you go for your pre-op it’s there and everything. And you hear things just recently on the news about different things so it’s very much more of, I’ve heard more about it probably since I’ve gone through. So yeah.
And have you seen the website they have?
No. I haven’t.
Ok
I didn’t know.
Did they mention it to you or did they or did you? And all the information did it come as another bit of information about the website?
No I didn’t really know much about the website at all. I haven’t looked. I’ve read about it on, I’ve looked it up on my and that and sort of read a little bit about it but not
On the website.
Not
Ok so you have Googled something?
Yes I have. Yes I’ve Googled some more information about it and everything.
After receiving written information about the project Rebecca also looked the project up online, which she found worthwhile.
After receiving written information about the project Rebecca also looked the project up online, which she found worthwhile.
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Okay. When you said you looked on, on the internet, were you looking at the website, any website?
I was just looking generally at the genomes project, the 100,000 Genomes Project and what we were trying to do as a country for people sort of that come after us. Sort of what it’s trying to achieve.
Emma wanted to find out more than was in the leaflet. She wanted more detail on what was involved in taking part and to hear from others who had participated.
Emma wanted to find out more than was in the leaflet. She wanted more detail on what was involved in taking part and to hear from others who had participated.
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Yeah.
And as I say, we wanted to find out a little bit more. So we Googled the study. But there wasn’t actually a huge amount on it. There’s a lot of bits on the internet about kind of the study, and when it’s going to report and what it’s going to do. But actually there was very little first-hand evidence of people who’ve been through the study themselves, about - you know - actually what was involved, what blood samples would be taken, could you do anything else with them? That information just wasn’t there for us at the time.
So you looked on mainly - was it Genomics England, that was mainly their website, and did you look at any of the -
Yeah that was the main places. I mean obviously there are bits on internet forums for special needs children, and bits. But yeah, I think you have to be quite careful about what information you pick, because obviously you can’t tell the validity of anything like that. So we have to be - we have to be careful. And certainly I like to make sure the evidence I’m reading is good quality evidence. And yeah, there was some on the genomics, but almost that was little bit too much for us. There was nothing for people going through it at all. That that information just wasn’t there for us.
Yes, so you would have liked to see more of that, yeah.
Mmm, definitely. Mmm.
So we were invited to meet the team over at [hospital]. Which is our local genetics centre. And I think we were both quite surprised actually, by what we encountered. I think we thought it was you know, it were run by Genomics England and - I don’t know, I think we were expecting shiny and new. And it really wasn’t at all, actually [laughing]. We, we met them in our local outpatients department of our centre at [place]. And there was a little room that we went into with two research nurses. Who kind of talked us through the information again. But I think we were thinking there would be a lot more information. Because certainly from the original information that we got, it was - this would be your opportunity to ask questions, and you will be given more information. And actually, we found that we weren’t, really. There wasn’t a great deal of information that we hadn’t already had. Yeah, very difficult.
Several people used the internet at different times in the process to access more information. Nick used Google to make sure the project was “genuine”.
I was a bit blown back by it all at first, bit blown away. Because I'd obviously never heard of it. So yeah, I was a bit –
So it's completely new to you?
Completely new, yeah. Yeah.
And did you find the information that you were sent understandable?
Not at first. But by going onto Twitter, I searched it through Twitter, and somebody on Twitter - I put a question about, you know, I really have no clue about what it is. Even though I'd read the letters, it just didn't sink in. So I spoke to - well, just sent a little message on the Twitter page that they have, and then somebody forwarded me a link which I think sent me to an internet link which explained in black and white, understandably.
Okay.
So it just made it much easier to read, like kind of - it was broken down into scenarios, which made it easier to understand.
Right. So what did you actually get sent in that first - when you first -
That first letter?
Yeah.
It told me about the person who, who it was that would contact me. And then just basically thereabouts saying that, you know, as [Son] has what we would class as a rare condition, we've forwarded him, we've enrolled him into this genetic, this -
Genome.
Genomes, yes, project. And then explained in - I suppose in their terms, what I would say, a doctor's terms - explained it. It just wasn't - whether it was a bit too much to take on board at the time, I don't know. But it just, there was just a lot of information.
And did they send a leaflet or a booklet with it?
No, I didn't have a booklet.
Right.
No. But I obviously found that kind of booklet information through the website, yeah.
Yeah. Okay. And was it - can you remember which website it was, that you were sent to? There's a Genomics England website?
Yes. I think it might have been that one. Because it was those I think that actually, that I -
Tweeted.
Tweeted, yeah. That I found on Twitter. Yeah.
Right, okay. And were they quite quick at getting back to you on Twitter?
Straight away. Yeah. Straight away.
Oh, that's good.
Yeah. Yeah.
And you got the link. Did they check up after you'd - did they get back to you on Twitter?
Yeah, well I obviously put, you know, thank you so much and they says, you know, if it helps, great, or if you need any further information, just let us know, so.
Okay. And you say that on the website, it was broken down into scenarios. So did they use pictures, or was it –
Yeah, there was some pictures. And there was kind of like explanations. You know, like saying like using another person. You know, so and so has this, and we don't know what it is, so we're looking into it. But somebody else could also have the same similar thing, so we're going to like group them together, and figure it out that way. It just made a lot more sense, seeing it written down. Like obviously - well, it was on screen obviously, but it just made it a lot more easy to understand.
That's good.
Yeah.
And did you - do you think if you hadn't been able to go on Twitter and get that additional information, do you think you would have agreed to take part in the study anyway, when you couldn't really understand it?
No, I probably wouldn't have. Because at first I just kept thinking well, do they - Like because nobody, no one actually told me that like you have to wait for, you know, the amount of people - nobody said anything, it was just left that you are enrolled and this lady will get in touch with you, from like the hospital. But through the website was where I found out that it's a waiting game. And it's just where you literally just wait. And then -
Wait for results?
Wait for results, yeah. Yeah.
And in terms of the information given was it useful? Was something missing? Was there something that needed to be improved?
Well the fact that I didn’t realise about the Genome Website [ha]. It’s about something that, you know, as I say I do go on things and I do look and I missed that completely. So perhaps some information about go onto these sites that’s maybe in a bit more, bit larger print than. Would be quite useful and given with the initial information. You know, if you’re interested in this project go onto our website that will give you more information because if somebody doesn’t like it in a written format they could look at that before meeting the research nurse. So that would be a really good, you know, maybe not for older people who may not have access but certainly for most people they would go on and have a look online.
Ok. So maybe to give more information about the address; the website.
Yes just on that initial one in the initial papers to say if you are interested there is a website you can look on for more information.
People had different views about the Genomics England website and how useful they found it and a few people, like Grandma Football and Linda, were not aware there was a website. Birgit found the website “quite clear” and said there were “different strands” for researchers and people who were part of the project. Kay found the website “quite good” and “interesting”. But others wanted other things from the website.
No it was all fine really, I’m quite happy with the information. The website's available, seems quite clear. Yeah.
Yes, have you had a look at the website?
Mmm yeah.
What do you sort of think of it, and was it easy to access and?
Yeah it was. Yeah, there's different strands for users or people who think about it, and researchers. It wasn’t made too simple, that's sometimes a little bit degrading isn’t it, when they just give you the most basic information. So at least there are links on there, on how do they do the genome, and stuff like that. So people can find out more if they want to, yeah.
How do you feel about - you mentioned earlier about the sort of website not really having that much information. Do you think then there should be much more sort of general knowledge, or?
I do. I do. And even if it was a daft thing like a - if you’ve been invited to take part, a secure part of the website you could go onto, to discuss, you know with people who’ve kind of been through it, "Look, what did you think about this? Did you get this question answered? How long does the appointment take?" That would be - again - such a useful thing to have. And it certainly can be done, because there are secure forums [laugh] all over the internet. And actually you could use that as a form of feedback for Genomics England, to kind of say, 'actually you know, people are bringing up this same issue, let’s look at that'. So that would be hugely inform, in - you know, for us the ability to chat to Genomics England, even if just, you know, social media, "Look I’ve got this question; can you give us an answer back?" Would be again really, really helpful.
Yeah.
But I think at the website at the moment is very fact-driven. It’s not massively interactive at this point. Which I think a lot more could be done with. Mmm.
Kay used Twitter to contact Genomics England to get more information about the project. They sent her a link which she found really helpful. The Twitter response made a huge difference to her deciding to participate.
Kay used Twitter to contact Genomics England to get more information about the project. They sent her a link which she found really helpful. The Twitter response made a huge difference to her deciding to participate.
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So it's completely new to you?
Completely new, yeah. Yeah.
And did you find the information that you were sent understandable?
Not at first. But by going onto Twitter, I searched it through Twitter, and somebody on Twitter - I put a question about, you know, I really have no clue about what it is. Even though I'd read the letters, it just didn't sink in. So I spoke to - well, just sent a little message on the Twitter page that they have, and then somebody forwarded me a link which I think sent me to an internet link which explained in black and white, understandably.
Okay.
So it just made it much easier to read, like kind of - it was broken down into scenarios, which made it easier to understand.
Right. So what did you actually get sent in that first - when you first -
That first letter?
Yeah.
It told me about the person who, who it was that would contact me. And then just basically thereabouts saying that, you know, as [Son] has what we would class as a rare condition, we've forwarded him, we've enrolled him into this genetic, this -
Genome.
Genomes, yes, project. And then explained in - I suppose in their terms, what I would say, a doctor's terms - explained it. It just wasn't - whether it was a bit too much to take on board at the time, I don't know. But it just, there was just a lot of information.
And did they send a leaflet or a booklet with it?
No, I didn't have a booklet.
Right.
No. But I obviously found that kind of booklet information through the website, yeah.
Yeah. Okay. And was it - can you remember which website it was, that you were sent to? There's a Genomics England website?
Yes. I think it might have been that one. Because it was those I think that actually, that I -
Tweeted.
Tweeted, yeah. That I found on Twitter. Yeah.
Right, okay. And were they quite quick at getting back to you on Twitter?
Straight away. Yeah. Straight away.
Oh, that's good.
Yeah. Yeah.
And you got the link. Did they check up after you'd - did they get back to you on Twitter?
Yeah, well I obviously put, you know, thank you so much and they says, you know, if it helps, great, or if you need any further information, just let us know, so.
Okay. And you say that on the website, it was broken down into scenarios. So did they use pictures, or was it –
Yeah, there was some pictures. And there was kind of like explanations. You know, like saying like using another person. You know, so and so has this, and we don't know what it is, so we're looking into it. But somebody else could also have the same similar thing, so we're going to like group them together, and figure it out that way. It just made a lot more sense, seeing it written down. Like obviously - well, it was on screen obviously, but it just made it a lot more easy to understand.
That's good.
Yeah.
And did you - do you think if you hadn't been able to go on Twitter and get that additional information, do you think you would have agreed to take part in the study anyway, when you couldn't really understand it?
No, I probably wouldn't have. Because at first I just kept thinking well, do they - Like because nobody, no one actually told me that like you have to wait for, you know, the amount of people - nobody said anything, it was just left that you are enrolled and this lady will get in touch with you, from like the hospital. But through the website was where I found out that it's a waiting game. And it's just where you literally just wait. And then -
Wait for results?
Wait for results, yeah. Yeah.
Aileen suggests the link to the Genomics England project website could be more prominent in the initial information pack.
Aileen suggests the link to the Genomics England project website could be more prominent in the initial information pack.
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Well the fact that I didn’t realise about the Genome Website [ha]. It’s about something that, you know, as I say I do go on things and I do look and I missed that completely. So perhaps some information about go onto these sites that’s maybe in a bit more, bit larger print than. Would be quite useful and given with the initial information. You know, if you’re interested in this project go onto our website that will give you more information because if somebody doesn’t like it in a written format they could look at that before meeting the research nurse. So that would be a really good, you know, maybe not for older people who may not have access but certainly for most people they would go on and have a look online.
Ok. So maybe to give more information about the address; the website.
Yes just on that initial one in the initial papers to say if you are interested there is a website you can look on for more information.
Birgit was happy with the information given during the process and found the website helpful. She liked the fact it wasn’t “too simple”.
Birgit was happy with the information given during the process and found the website helpful. She liked the fact it wasn’t “too simple”.
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Yes, have you had a look at the website?
Mmm yeah.
What do you sort of think of it, and was it easy to access and?
Yeah it was. Yeah, there's different strands for users or people who think about it, and researchers. It wasn’t made too simple, that's sometimes a little bit degrading isn’t it, when they just give you the most basic information. So at least there are links on there, on how do they do the genome, and stuff like that. So people can find out more if they want to, yeah.
Emma feels that the website could be more interactive.
Emma feels that the website could be more interactive.
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I do. I do. And even if it was a daft thing like a - if you’ve been invited to take part, a secure part of the website you could go onto, to discuss, you know with people who’ve kind of been through it, "Look, what did you think about this? Did you get this question answered? How long does the appointment take?" That would be - again - such a useful thing to have. And it certainly can be done, because there are secure forums [laugh] all over the internet. And actually you could use that as a form of feedback for Genomics England, to kind of say, 'actually you know, people are bringing up this same issue, let’s look at that'. So that would be hugely inform, in - you know, for us the ability to chat to Genomics England, even if just, you know, social media, "Look I’ve got this question; can you give us an answer back?" Would be again really, really helpful.
Yeah.
But I think at the website at the moment is very fact-driven. It’s not massively interactive at this point. Which I think a lot more could be done with. Mmm.
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