Betty

Age at interview: 85

Age at diagnosis: 84

Brief Outline:

Betty was diagnosed with breast cancer in January 2017. She was invited to participate in the Genomic Project during a pre-op assessment meeting. She feels strongly about the importance of medical research.

Background:

Betty lives in semi-sheltered housing, she is widowed and has three daughters, one of whom lives nearby. Betty used to be a local councillor and is white Welsh/ Scottish.

More about me...

Betty lives in semi-sheltered housing, she is widowed and has three daughters, one of whom lives nearby. Betty and her late husband lived abroad for part of their married life and she used to be an elected local councillor.

Betty was diagnosed with breast cancer in January 2017. She had a mastectomy, and this was followed by three weeks of daily radiotherapy sessions. She was invited to take part in the 100,000 Genomes Project before the surgery and she understood that her decision would have no effect on her care options and that she was free to leave the project at any time. 

Betty does not see any potential risk in taking part in the project and she trusts the NHS will keep her personal information safe. However, she has no confidence in the pharmaceutical industry and thinks that they charge the health service too much for their products.

Betty feels that her breast cancer diagnosis at the age of 85 and her subsequent treatments has made her three middle-aged daughters more aware of the need to be vigilant and to keep checking for breast lumps.  

Betty would like Genomics England to keep in touch and to update her. She had been wondering what was happening because she had not heard anything from them since she consented to take part in the study six months ago. She thinks that a letter from Genomics England would be nice.

Betty feels strongly about the importance of medical research and thinks that people need to co-operate with the NHS to help find out more about health conditions like cancer and the development of new treatments. She said ‘I don’t want anything back from it. I don’t expect anything to come back’. Her main motivation to participate in the 100,000 Genomes Project was to be helpful and to give the necessary information to help achieve a successful outcome for the benefit of her daughters and granddaughter and the community in general. 

Betty was invited to take part before surgery for breast cancer.

So at what point during your stay in hospital did a nurse come and talk to you about the Genome Project?

Quite early on before I, before I started the, in fact I think it was before the operation, in fact. Yes they were doing several blood tests and things and I just thought it was very interesting altogether. I love to have new experiences, quite an adventurous person and I said, “Yes I’ll go ahead with that.” And she explained what it was about as far as the bits of paper were concerned. And I’m glad to help. 

Ok so what do you remember?

The only thing…

What she said to you?

She explained that I didn’t need to go along with it. That there was not going to be any change in my experiences or my nursing or the operation if I didn’t go along with it but I understood that. And she said, well that it was a case of they would contact me possibly some time to do what I am doing now. And that I could pull out any time I wanted. That was made very clear that even up to the last moment I could pull out any time. So I thought, well ok. 

Betty enjoyed reading the leaflet and explains why she found it useful.

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

Betty says she participated because she is naturally curious and thinks it’s “vital” people support medical research.

In general what is your attitude to the idea of taking part in medical research?

Excellent because it’s vital isn’t it. And I appreciate that it’s vital that people co-operate and, and that’s why I want to do it. Yeah.

Ok. Vital, what do you mean by it?

Well if we didn’t co-operate no one would find out. I mean if we want to be helped with health conditions they need to know more and more of where things start and what it’s about. So that is vital. I think it’s very important.

Why do you think like that or have this attitude about the importance of

I think it’s, it’s in the genes. I am just curious. I’m a Gemini. I’m a compulsive communicator. I just like to be involved so it was right up my street to be involved. Shall we say.

Ok. 

Which is not a, I understand that not everybody wants to divulge every detail but I’m very willing to because it’s so important for the outcome of this project, yeah.

Betty was surprised at how much blood was taken. She also said her mouth was dry when they took a saliva sample.

The only thing I didn’t like as I said to you before was getting phial after phial of blood. I said, “Hey you’ve got about an armful now. And that was beginning to be a little bit stressful to me when the needle was in for a very long time but there you go. It was over and done with. And I understood that they needed the blood for different places for different reasons to check so all in a good cause. And once I’d given the blood they said they wouldn’t want anymore. And then I had to do the spit into my which was difficult because I was very, very thirsty and dry but I got enough, just enough up to the marker for them to do a DNA. I wondered at the time if I would ever know the result of that DNA. Could I buy the result of the DNA to know where I came from etc. etc. You know I think I’m half Scottish and half Welsh but my, the rest of it. So I think I’m Celtic but the rest of it’s a mystery so. There you go.

Betty trusts that the NHS will keep the data within the remit of the Genomes project and not give it to the wrong people.

And do you see any kind of potential risk or pitfall in taking part in the Genome Project?

I hope not. I mean I’m giving it because I trust the people who are going to look at this and say, you know, make up their mind about me and what’s happening to me. I trust them not to give this information to the wrong people whoever they may be. You know like we have now been made aware of all sorts of. When we sign up to things that it can go worldwide almost. And I trust the NHS to keep, to keep things within the remit of the project.

Ok so the wrong people would be people who have other interests?

Yes, of say pharmaceuticals, somebody who might want to persuade me to spend my good money on medication that really is not possibly required. I guess I don’t trust the pharmaceutical industry. I think they obviously need to make a profit because of their research but at the same time I think that charges to the health service for. I mean I don’t know what everything costs really except someone said, “I had an MRI scan and someone said, “It costs about £600 you know.” And I thought, wow. You know it’s all huge money. So I don’t want the wrong people to get back to me and say, “Well this would benefit you.” When it’s possibly not necessary.

Betty doesn’t know exactly where her samples are stored but she trusts in the “professionalism” of those running the project, and that the samples won’t be left to deteriorate.

Let’s talk a little bit about data storage, about storing your samples, the samples that you donated. Tell me about what you understand about how your data will be stored or shared. Did you know where they will keep the data?

No I don’t actually dear, no. I do know.

Ok so do you think they might have explained to you and you forgot?

Do I need to know? That was my question. Do I need to know what happens? No. 

As a patient participating in research yes.

I guess that I thought, from my understanding was that it was going elsewhere. It wasn’t remaining in the [city] area. It was going elsewhere to be checked. I’ve forgotten where. Was it North of here for some reason. I didn’t take that on board.

Yes there is a central, let’s say, place where all the data, all the samples are going to be kept.

Agency. Is kept.

And research is going to be conducted. I mean that is the, but it’s within the sort of NHS.

Yes I understood that it wasn’t going to be sent hither and yon and where it oughtn’t to be. It was being kept secure, you know, safe and purposeful.

Ok so that was explained to you. It was a central place where it would be stored securely?

Yes.

And sort of

I didn’t have to give it another thought. It was, for me it was sufficient that they’d said it would be taken care of and it was valuable, you know.

Ok so that’s how you felt?

That’s how I felt that it was

Confident that?

It would be, the right thing would be done with it yes.

Ok, ok. 

But I understood also that, that at different times the blood samples could differ couldn’t they. I didn’t quite understand why that on that particular occasion they needed to take all of that because in another week or two or three it might have a different constituency, you know. I don’t suppose blood samples stay the same month after month, year after year. So you know I didn’t. Well it was enough for me to know that professional people were dealing with whatever was required.

Ok so that, sort of you were at ease with this?

[uh huh]

Ok. It seems to me that you don’t have any worries about data storage.

No I don’t.

No, ok. 

I hope it lasts. I mean I understood that it would be in, kept in conditions where it wouldn’t deteriorate which where it would continue to be useful and so that was sufficient for me, yes. Oh I have said, trust [laugh]. Trust in professionalism and trust. I hope it’s not misplaced but I mean where could it go you know. 

Betty received a phone call telling her they didn’t need any more information and that someone would be in touch.

So far your involvement in the project has consisted of giving your blood sample, giving the sputum, the spit sample. Anything else apart from this interview?

No I haven’t been contacted. You are the first time yes.

Ok so after they did the tests has anybody else been in contact with you?

I had one phone call to say that probably it would be August before the, someone got in touch and here you are. But so I haven’t had any. No they said, the lady on the phone said they had enough information at that point that they didn’t need to call me or to, you know, to do anything else then. 

Betty would have liked to know what “use was being made” of her samples, where it is and what’s happening.

Do you see any ways in which the process of, could be improved? More information perhaps or?

Well I guess it would be good to be kept informed as to what use was being made of my blood samples, my spit, [huh] Where, where is it now? What’s happening? Have the already discovered something that I might benefit by knowing? I don’t know but I feel that there’s a big gap now between, yes between what was given that day and what I was told on that day. I would. I’m quite happy now that you’ve contacted me because I was thinking, I wonder what’s happening with that Genome Project. So I think a little more information would be useful.

And to keep in touch with you?

Yes.

Ok in which way? To receive a phone call or to get a letter?

Letters are good. Phone calls can disappear in the, in the air as it were and I might forget details but a written, a written word is there forever, you know, and I quite like to have my little health file kept for future reference and I like to read the words, yes.

Ok so a sort of, kind of make this communication ongoing and for people that took part to be kept informed about where they are at and maybe what the next step will be?

Yes.

Something like that?

Something like that, yes.

Ok.

I, and I would I hope that I would be given the opportunity eventually to know what my DNA was saying about me. Why, why was I well until I was 80 and then suddenly I get, well. I know it’s age but until I was 80 nothing and then from 80 I get a hiatus hernia. I get acid reflux.