Nicola

Age at interview: 57

Brief Outline:

Nicola was diagnosed with ovarian cancer in July 2016 and participated in the 100,000 Genomes Project shortly after. Nicola’s son died of cancer in 2012 and she wanted her DNA to be used to help further cancer research. She provided blood and tissue samples for the genomes project but has since been told that it will not be included in the research.

Background:

Nicola works as a university professor and is white English. She is married and has three adult children, one of whom died of cancer in 2012.

More about me...

Nicola agreed to take part in the 100,000 Genomes Project shortly after she was diagnosed with ovarian cancer in July 2016. Cancer research and its genetic basis are important to Nicola because her son died of cancer in 2012 and she is “very interested in getting rid of this hideous monster that is cancer”. Nicola thinks her son may have taken part in the study. Nicola is also interested in whether their family history has genetic implications for the health of her family.

Nicola was approached by researchers straight after an appointment with a consultant about her cancer treatment. The researchers explained what taking part in the genome study involved and reassured her she didn’t have to take part if she didn’t want to. Whilst Nicola found the decision to take part straightforward because of her son’s experience, she felt it would not be easy to say no, given patients are invited just before having surgery. Samples were taken during her cancer treatment and operation. 

Nicola recently found out that her sample is not being included in the project. She has been told that she can phone a number to find out why but she is not inclined to bother. She wonders whether she had the “wrong sort of cancer” or that maybe the biopsy sample was not good enough to be included in the project. 

Throughout the process, Nicola made it clear to the researchers that her only interest in the study was to help improve cancer research. She has very strong ethical concerns about the implications of genetic and genomic research for eradicating autism or Down’s syndrome; “I think there is a big ethical debate that hasn’t been fully realised because people mix up disability or difference with disease”.

Nicola’s son died of cancer and she has ovarian cancer. She hopes taking part in the genome project will contribute towards “getting rid of this hideous monster that is cancer.”

So you had decided on the spot, as it were?

Yeah. Because of [Son’s name], really. Because I thought if we've got a cancer thing in our family, and it doesn't benefit you directly, but that's not the point, is it - you know - I just thought 'yeah, I am very interested in getting rid of this hideous monster that is cancer'. Absolutely. And you know, I know that it's very sort of contested and difficult, because of all those other avenues that you can go down, but I think there's a massive, massive difference between disability and cancer. And you know, some other things like motor neurone disease, actually. I feel the same. And cystic fibrosis, and all that sort of thing. And if a gene that causes cystic fibrosis can be repaired, I think that's a good thing, actually. I do. Mmm.

What benefits do you see of taking part?

No - no personal benefits for me. But I like the thought that if cancer can be cured, my having cancer can help the process of cancer being cured. So, and having felt completely absolutely unable to fix it with [Son’s name], it feels a bit - a little bit better that you know, possibly giving some samples can fix it in the long term. Really, I suppose.

Nicola would like to see genomic medicine eradicate cancer but thinks there are ethical concerns with it being used in other areas.

That - I think the aim of the project is bigger than the bit that I'm interested in. Because it's looking at genes which give rise to you know, disease like cancer and so on. But I think there are aspects of it about genes that give rise to things like Down's syndrome. Which I think is problematic. Particularly now, in relation to this new test, of - you know - this new very easy test that you can have, and all that sort of thing. So yeah, I think it's described as a medical advancement, and as far as I can see, in terms of cancer it's a fantastic medical advancement. But I think there's an ethical underpinning about it that I'm not altogether comfortable with. Mmm.

I think it's very difficult, isn't it. Because there are - There are potentially fantastic medical advances, which could eradicate things which are absolutely horrendous on any planet that you could possibly name, like your 25 year old son dying of cancer. And that would be brilliant, if cancer was cured, that would be brilliant. But I absolutely think there's a massive danger of this sort of homogeneity of the population, where anything that's outlying from the sort mythical norm, or whatever, is deemed as undesirable, and can be eradicated. And this is happening with this Down's syndrome test, which I think is hugely disgracefully problematic. So I think there's a big ethical debate that hasn't properly been fully realised, because people mix up disability or difference with disease. And I think they're not the same thing at all. Absolutely not. So I think it needs - I don't know, I just wish that my contribution had only been about cancer. That was the only conflict I had.

The researchers talked through the consent forms carefully to Nicola. She was sure she wanted to take part because of her family experiences of cancer.

You've told me about the signing the forms. 

Yeah.

And you found the forms alright to read.

Well, they read them out.

Part of this project is to feed back -

Yeah. They read them out.

Right.

And that - you know, and I was sort of getting a bit of irritated, because I do loads of ethics forms in my job. But I absolutely completely understood, because I do loads of ethics forms in my job. So they read everything out to me, and checked my understanding all the time. And they said the same things in different ways to further check my understanding. So it was very thorough. Yeah. They didn't just say "Sign here." [Laugh]. "Sign here, or I'm going to cut your leg off." [Laughing].

Nothing like that happened.

Nicola isn’t sure she will get any results. She would be “panic-stricken” if she got an appointment to discuss her results, in case they were going to say her cancer had come back.

I don't think I get any results. I don't know if I get any. See, I haven't read any more correspondence since, and it's quite possible I've got a letter at home that I haven't read. I just thought 'yeah, there you go, have that out of my arm - have that other stuff out of the operating theatre'. All I had to do when I was there, when I was having my operation, I had to keep telling them - because what sometimes happens is, the internal mechanisms in the hospital are such that you've signed all the forms, and you go for your operation, and nobody knows, so nothing happens. So I was engaging with it then, saying "Oh, you've got to this - I'm in this project." But since then, I've never given it a second thought at all. Never. I mean, I could phone them up, and they - they might write to me. But I just can't remember.

And do you know that they took the samples?

I've no idea. Not the faintest clue.

But when you told them you were in the project, did they respond to you?

Oh, yeah. Fine, yeah [laughing]. No, I didn't ever ask. I don't know [laughing]. That's them now, I've done my bit, haven't I. I'm not going to be dissecting them myself, am I [laughing].

So if you get results, would you like to receive them by letter, by email, in an appointment?

Ooh. If I got an appointment, I would immediately be completely panic-stricken, because I think they'd be about to tell me that my cancer had come back. If I got a letter, I'd want the first line to say, 'your cancer is definitely not come back, do not think that'. I'd like them to say that on the outside of the envelope. I wouldn't want it by email, because I probably would ignore the email anyway. So, however they do it, they have to do it in such a way that doesn't alarm. Because as soon as you've got something like this, you're really hypersensitive to anything that says - although they've said oh, it's all gone - you know - if I got a letter out of the blue, I'd immediately think it was going to say 'oh no, we've changed our minds'. So, sensitively. Probably by letter. I mean, I wouldn't want to go for an appointment, because it's - you know - I've got to go to work, and do other things. I don't want to sit in a hospital to be told all about it, at all. Because I'm really quite busy [laughing]. I've got other things to do now.

On reflection Nicola feels she might have thought more about taking part before she agreed, but at the time she had her “cancer head on”.

I think probably from talking to you, they probably ought to maybe think about it a bit more, in a bit more of a nuanced way than I did [laughing]. And, you know, maybe it's quite a big, serious thing, I suppose. Yeah. I think it is quite - there's more - Because I was so - I only had my cancer head on, I was very focused on that. And if I - You know, and I'm part of the project because of that experience. But I suppose like my friend, who's got three children with Fragile X syndrome - I would say if she was approached, she'd tell them to fuck off. Honestly. She would. And I would as well, if I was her. So, you know, it's - it's not all the same, is what I'm saying.

Nicola feels that the cancer part of the project should be separated from mapping things like Downs and autism and they shouldn’t be “lumped together”.

I would really rather they did a separate one for cancer [laugh] honestly. Because I don't - I really - I think it's absolutely astonishing that although Down's syndrome is obviously a chromosomal difference, etc., so it can be mapped - if you lump Down's syndrome in with cancer, you're saying 'your beautiful baby, who happens to have Down's syndrome, is just as much of a catastrophe as your hideous tumour'. And I think that's really problematic. I think there's a massive difference between disease, and life threatening hideous disease and disability, or a difference in that way. Because I don't believe that children with Down's syndrome are necessarily disabled at all, I think they're disabled by other people's attitudes, but actually if I had a kid with Down's syndrome I'd be - I'd be perfectly happy. I wouldn't have any - I wouldn't care, I wouldn't care. That would be my beautiful baby, and - you know - I've got a cousin with learning disability, with a genetic condition, and she's just - she's just somebody in our family. So I think the politics of ableism is something which is poorly understood by medical people. And even though all sorts of different things are expressed on, on the genes, they're not all the same. Autism isn't a tragedy. Down's syndrome isn't a tragedy. Fragile X isn't a tragedy. All those things. And all those things that you can't label - you know - not tragedy. But my 25 year old son dying of cancer was a monumental tragedy, which I would have done anything to prevent.