I think my experience has been very straightforward. It’s been very good for me to take part and I’d really recommend it. I think it’s, it’s our future. We need to look at how the future is, you know, everything is going to improve. And better things for, you know, better results for our families and children and people.

I would like to say how the whole process has been very straightforward. It’s been easy to follow and again I think, you know, again the support I’ve had. The support that also I had at the hospital with it all being explained and follow up, I think it’s been very good. I really do.

How did you sort of feel afterwards or?

I think we were exhausted. Absolutely exhausted.

Yeah.

Physically, from kind of scrapping with our son. But also mentally, strangely – I think we were very, very tired afterwards. And the fact it’s such a long way for us. We’re an hour and a half away from our genetics centre. So to have had the ability to do it locally would have been hugely helpful. And we appreciate you know, it’s very specialised, but actually we didn’t need to be in [place] for this at all. So perhaps you know, travelling to meet patients and their families would be – again, a small thing perhaps – but would’ve made a real difference to us. But it meant that we’d had an hour and a half journey. Then obviously this really stressful appointment, and then an hour and a half back. Makes a very long day. A very long day. Yeah.

I think we’re glad we’re involved. Very much so. I think we feel part of something a bit bigger. Which yeah, is an interesting place to be, I think. On the whole, I would say it’s been a positive experience. We do feel like we’re doing something. Which I think – the ability to have some control over what’s going on is hugely important. Particularly with families with children with no diagnosis or adults with no diagnosis, the ability to kind of feel like you’re doing something, is really important. I think there are lessons that the hospitals, geneticists and Genomics England can learn, and improve going forward for us all. Negatives I think are more logistical at this point. About kind of ironing out the system, making sure the information it out there for us all. Because I think there are parents with a thirst for that information, and it’s just not there at this point. But yeah, I think on the whole we would do it again.

Oh well, I think – you know – it says in there that you might get some feedback, but. I don’t know how applicable that is, or how relevant that is to yourself. How applicable – I don’t know. I mean, it would be nice I suppose to, to get more information. But then again do you really want to know everything? You know, if they come up and say, “Oh your dementia risk or whatever could be very high.” I don’t know. Do you want to know that? [Laughing] or not, you know?

Yeah, would you want to know that? No then, or?

I don’t know. You would have to have a discussion I suppose wouldn’t you? I mean you have got to plan your life. Same as the cancer you have – you can’t put your head in the sand. You know, you have got to plan. But you have – I found out, you want to ask questions. Because you want reassurance. But then you’re not getting the reassurance, and then you feel worse. So that’s what I’ve learned in the last two or three months really.

That’s interesting.

Be careful what you ask, yeah.

So you won’t always – you don’t always get the answer that you want to hear, or? Yeah.

Yeah, yeah. You’re desperate to know, but of course you really want the positives don’t you? And then if they can’t give you that, it doesn’t feel so good. You have to get your head around that again.

Did you talk to your Mum about taking part? Was it quite a big discussion? Or did both of you just say “We’ll just take part”?

She’d always seen – when I was little – she would always take me, and I’d be the kind of guinea pig at the doctors. You know, where they listen to your chest, and things like that. So she’s really supportive of research. I did talk to her about it. I think the biggest thing wasn’t necessarily do we take part, it was more – she wasn’t sure whether if they found anything that could be serious or indicative of something else, she wasn’t sure if she wanted to know. Whereas I knew I wanted to know. So I think that was just the hardest one.

Do you know what she decided in the end?

I think she – I don’t know. I think she went for being told if there was something. But I think the chances – I guess there is always the chance that if I was told something, and told her, she’d then maybe know she also has some problem. But yeah, I think she went – I think she agreed in the end.

But yeah I think there wasn’t anything in there that was too concerning, just general things really. You know, like if, if one person wanted to know did the others have to and things like, things like that but the main issue that we faced in deciding whether or not to do it was the guilt factor, with my parents. Because if it came back at either one of them had the same, the, c–, you know, perpetrating gene if you like then they’d feel quite guilty. And it was whether or not we would, I could put them through that because it was, you know.

Ok

That was the only other thing because I think that’s difficult to know I think. If it’s. If you can think, Oh it’s my fault. But you know.

Ok and that was something that they had brought up?

No it’s something I brought up yeah because I know, I know that my mum in particular would take it quite hard if that was to be the case. So I had to make sure they were happy to know before we sort of went and did that.

Ok

But yeah we’ve. I think we’ve worked around that one [ha].

The guilt factor [laugh].

Yeah [laugh].

[Laugh] That’s quite . Yeah I think, I think I understand what you mean by the guilt factor. So is it kind of to do with responsibility or?

Yeah, yeah. I think if you find out that you’ve passed on a gene that’s mutated into something that’s or, you know, that’s cause a harmful disease to your child you will feel guilty aren’t you. You will feel a bit rubbish. So you, I didn’t want either of them to take on a personal responsibility for that.

Ok. So was that a factor that you discussed with your either the genetics lady?

Genetics counsellor yeah we did discuss it with her. Yeah but we decided that obviously it wouldn’t be viewed by me certainly as that and it’s just about moving forward. Is there anything I need to know in planning for my own children and things like that and. Yeah so we decided that it was, was worth it and we should just, you know, not really dwell on that side of it.

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 to spend an awful lot of money building somewhere to be able to store it all.

It sounds absolutely crazy. But they could, they had on X-Files, they’ve had on CSI before, like murders done by people that are hypermobile that are so bendy they could put their arm in through the letterbox, and they – that, you know, could they take that DNA gene that is bendy, and use it to an advantage for some reason? You know? Could they take [sigh], find what the gene is that makes our muscles weaker, and our collagen weaker, and if they found that cure for that, could they then not use that cure to then bulk up people’s muscles? Same as like steroids. So it’s that. They have to be very careful with what they do with this information. And even with what they develop from the information. Because it could then be used for the wrong purposes again. Even if it’s been, you know, made and used completely innocently. I think there’s – there’s – there’s always a, you know, a consequence, isn’t there.

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.

Again, the things like insurance, do we have to declare it? And anything like that. Wasn’t from me or dad, it was more for [Daughter] future, because we already can’t get insurance for her. Sort of holiday insurance. So that did concern me a bit. But apparently there is an agreement at the moment that nothing would be declared. Whether that’s just because it is a – like a study, like you say, rather than this is what we actually do in the NHS. That might change in the future. But for now, the need for an answer is greater than what that would actually imply later, especially for anything like that.

And also another thing I read there and I asked about was my travel insurance and my health insurance and things because you know, you go into a project like this and you might find out things that you didn’t know and then how does it affect the rest of my life. I can’t get travel insurance from now on because I’ve had screening for this disease or that disease. So, you know, that affects, that would have affected me. So that could have been a pitfall [ha].

Exactly.

But I was reassured. It states in the information that actually you come to an agreement that it doesn’t affect travel insurance. So that’s actually, you know, part of the consent form. So that was reassuring to me that actually I don’t have to disclose any information.

Do you think there could be any pitfalls with the project at all? Or any disadvantages or worries about the project?

Heather: Not for us I don’st think. Just if they don’st find any answers, and they’ve got to close it off. But even then, they might find answers, as I said, fifteen, twenty, thirty years down the line.

Julie: Mmm.

Heather: They might find something else that pops up. They might ask us again.

Julie: I think, being asked that question makes me think about developments genetically where they’sre trying to develop things that maybe aren’st natural. And I would definitely want to – if I thought that that might be something that had come from our samples, unlikely I know, but if I thought that, I would just want to know more information about it first. I think we’sre quite scientific people anyway, so we’sd be more positive about those advances and trying those things, than we would like ‘oh that’s not natural, don’st do that.

Julie: I think we would be like

Heather: I think we’sre just quite knowledgeable about it. In, I don’st think we know everything about it, I’m not saying that. But I think in general when I think about all the different people taking part in this project, there will be some people out there that don’st know much about it, and aren’st very interested in the science side of it, that it’s just not there thing. Whereas it is our kind of thing, and we’sve done a lot of research into it. And we are quite knowledgeable in science in general, and different test that can be done. And I think we trust them, because we know a bit more about it. So I think we, we have a rough idea of the pros and cons of those kind of things anyway, and we do tend to be a bit more sciencey in our views, so.

Julie: And realistic, I think. I think people are scared a bit, but I think people are scared of the unknown.

Heather: Yeah, but realistic for different people mean different things.

Julie: Right. Yeah.