Julie: Yeah I mean they explained to us that it was all going to be held securely and it wouldn’t sort of be open to everybody but people could apply to go and see it and use it in their research and, which is fine. You know I think I’d be quite happy for it to be used.

Mark: Yeah I mean the first thing they said to us was that I know our information wouldn’t be directly identifiable to us.

Julie: No I mean it has a number but it remains

Mark: So somebody somewhere has the secret list with names next to numbers but that, that is held securely and not shared with any research establishment or third party. And indeed the data is then, you know within a pool of data of course and but we are not separately identifiable to you know, anybody who is using the data. That’s the way it’s been explained to us.

What the issues might be around data security or protection?

Mark: Well I mean we all leave a, leave a footprint in everything that we do these days in life whether you’re searching on the internet, buying something online and what have you. And you know, there’s unfortunately there’s companies out there that, that do profiling and all the rest of it. Apart from the annoyance factor you’ve then got insurance companies who, if they could get hold of that data relating to you would then go, Right [Name] I know, I know that you’re diabetic. I’m going to whack it, a premium of 25% more because of that knowledge which isn’t the

Julie: Similarly you wouldn’t like it to be, you know, so that people selling things will say, Ok we know he has got that condition so they are going to, you know, bombard you with phone calls and letters and emails trying to sell you products. And do you know what I mean? It’s sort of, you know, that you don’t want that to become the case do you. So

Mark: No you don’t. You don’t want it to cost you more [laugh].

Ok. Were these important issues to you that they assured security?

Julie: Yeah I think the knowledge that they, they did, you know make sure that we knew that that wasn’t going to be the case that was important, yeah.

Ok. Do you have belief that they will be secure?

Julie: Yeah I, yeah I trust, yeah

Mark: Well I think we can only trust that. I mean I’ve not inspected their systems and their processes and procedures so all there is left is trust actually. And that’s the balance that you have when you enter, you know do a project of this nature is that there is a line where you can only get so far and then it is, it does become a trust barrier that you go through. But I think

Julie: I think the desire to want to do good with it for something good to come out of it is going to be far outweighs the negative thoughts which I have had so far.

Mark: Yeah exactly.

Julie: No I don’t think so more than to say we’re very proud of [Daughter] aren’t we and what she’s trying to do and, you know. Just trying to live our life and do something positive with it and it’s never stopped her keep on trying, studying and you know.

Sure.

Julie: So yeah just to say how proud we are of her really and obviously we just want to back her up and.

Mark: It would be good to see some output when they do get the results.

Ok.

Mark: Not for it just to be held by the, you know, research establishments, pharmaceutical companies and educational areas because, you know, they’ve advertised it, I think on the TV. It would be good to feedback to the public some of the things, some of the positive things hopefully that have come out of the project because if people are asked to enter into these types of projects in the future unless they know there’s a positive outcome why would they bother unless they’ve got a personal interest.

Ok

Mark: There’s a lot of things are going on in the population for people who don’t have day-day conditions like this who won’t feel any other, you know, enticement to, to perhaps get involved which may be again preclude people getting the info.

Julie: I think it’s just the time you have to wait now that’s the issue. You know you get. We thought we might have got some results by Christmas but we had a letter to say it will be another 9 months at least. So

Right ok.

Julie: You know it’s just the waiting now really.

Ok so when you got that letter how did you feel about it?

Julie: We were a little bit sort of disappointed. We thought maybe we’d have got, you know. But we understand I mean the testing is very quick but it’s the reading of the results that takes the time. And you know you kind of have to understand they’ve got lots to look at haven’t they?

Sure. Did they, what did the letter say? I’ve not actually seen one of these letters.

Julie: I mean I’ve probably got it somewhere in the file to show you.

Mark: Yeah

Julie: I think it was just basically, you know, we’re very sorry but there will be this sort of delay, possibly another 9 months so.

Mark: It’s kind of a just to keep you updated with events XXX.

Julie: Yeah. I mean we were told to expect maybe phone calls sort of for extra information. We’ve not had anything like that. So

Ok.

Mark: [mutter]

Julie: They’ve not needed to ask us anything else yet. So

So you said something a little bit about helping other people in the future. Do you have any ideas of how that might, how that might eventually?

Julie: Yeah it could be, anybody can look at the information can’t they. I mean they can’t take it out of the rooms sort of thing but they can go in and use, use what the findings are. And it could be, you know, it could be any number of developments in medicine or, you know, the companies that are, drugs companies or anything like that in the future just to be a part of that and have something, you know, just to leave a bit of a legacy really that might be useful to somebody at some point, you know, is…

Mark: I mean more specifically with [Daughter]’s condition if they discover a gene mutation in either of us or both of us for that matter that can be isolated to the dilated cardiomyopathy condition that [Daughter] has as opposed to a hydrotropic as opposed to something else that is distinctive enough in the sequencing then that would clearly provide for a marker for testing and advance detection of the condition in other people of course.

Ok.

Mark: So you know that’s how it may manifest itself in one way. And if they’ve got, you know, statistically significant occurrences of that with, through testing of other people with a similar condition then you know that, that would obviously give a great, great advantage in the future hopefully for others. Or indeed you can think of it in another, in a negative way that they’ll screen embryos to you know, not pregnate them kind of thing so that you get it out of the gene pool.

Julie: And it could be, you know, it could be any number of developments in medicine or, you know, the companies that are, drugs companies or anything like that in the future just to be a part of that and have something, you know, just to leave a bit of a legacy really that might be useful to somebody at some point, you know, is, is

Mark: I mean more specifically with [Daughter]’s condition if they discover a gene mutation in either of us or both of us for that matter that can be isolated to the dilated cardiomyopathy condition that [Daughter] has as opposed to a hydrotropic as opposed to something else that is distinctive enough in the sequencing then that would clearly provide for a marker for testing and advance detection of the condition in other people of course.

Ok.

Mark: So you know that’s how it may manifest itself in one way. And if they’ve got, you know, statistically significant occurrences of that with, through testing of other people with a similar condition then you know that would obviously give a great advantage in the future hopefully for others.

And the other outcome is not just detection but cure because if in the future we become advanced enough to do genetic engineering and splicing and replacing defective genes and all this sort of jazz which, you know, I’ve heard bits and pieces of then you know clearly the initial steps are identifying the defective genes or the causation you know of it. So that, that’s obviously hopefully another outcome that might improve other people’s lives.

Julie: Yeah I think I got an email from her initially and then obviously we were invited to go and have a chat where they went through all the information. They basically had to read out everything to us.

Ok.

Julie: While we were sat there. And obviously then we had to sign our consent and, and bloods were taken at that point but

Mark: Yeah it was a very contractual looking and sounding document.

Julie: Yeah

Mark: Which they apologised for countless times but, you know, it’s a. You’ve got to understand what you’re getting into.

Ok so you discussed with the genetic counsellor and you decided to take part and I gather that you went back and they told you. They went through the form like with a fine toothcomb.

Julie: Yeah read everything out and made sure we understood and made sure we had a chance to ask questions and obviously then, then we signed and then they took the blood so all on that day.

Ok So that, the way that they went through it all that was sort of a very helpful process?

Julie: Yes it was, yeah, yeah.

Do you think if you hadn’t had that you would feel as comfortable with it or?

Julie: I don’t think I would have signed it without having face-face sort of time with, with them. I think we needed that really.

Mark: Yeah I mean, you know, I’m used to reading contracts and stuff like that but the language was very contractual but it was understood, could understand it. But I think the benefit of having a face-face is, is always useful because you always think of things that aren’t on the page to ask.

Julie: Yeah

Mark: Yeah. But they, they explained at that point that we weren’t obliged to inform any insurance company and indeed it would only affect you if you were taking out new life assurance because we’ve got existing life insurance we took out moons ago, you know.

Right

Mark: So clearly you know with insurances you just don’t know do you, whether or not you’re meant to disclose as you go along but apparently the disclosures at the point of time that we took out the insurance were sufficient. It’s just as if you, if you took out a new one if you know what I mean in the future. So we understand that insurance companies we’re not obliged to in, to advise insurance companies but there’s some sort of conditions that the insurance companies have agreed to which come up for either renewal or they lapse in 2017. So, you know, still a little bit of a concern in the back of the head as to, you know, whether or not in 2017 they all turn around and say, Well if anybody is having genetic counselling or indeed have had any tests done then they have to disclose the results.

Julie: I think because it’s a research project I think there was a thinking that they wouldn’t have to. There’s been a bit of an agreement with insurance companies.

Ok.

Mark: Yeah but it’s, at the moment that’s an agreement.

Julie: Yeah

Jenny: But it, but something could change in the future which

Ok so that’s something that is of concern for you.

Mark: Which is little bit of concern because it’s the unknown of course.

Ok.

Mark: Hopefully you know people will be sensible but you never know.