Pam

Age at interview: 84

Age at diagnosis: 84

Brief Outline:

Pam was approached to take part in the 100,000 Genomes Project when she was waiting for breast cancer surgery. She hopes by donating her sample, researchers will be able to better understand hereditary diseases.

Background:

Pam is retired, but previously worked as a secretary. She has two daughters, seven grandchildren and three great grandchildren. She is White British.

More about me...

Pam was approached to take part in the 100,000 Genomes Project when she was awaiting surgery during treatment for breast cancer. A couple of hours before her surgery, Pam was approached by a project member who explained what the project was and what it involved. She was told that the project was studying DNA to help reveal more information about genetic diseases and that if she agreed to get involved, samples would be taken during her operation.  

Pam felt that she was given enough information to understand what was involved and was convinced to take part. She was also given several leaflets which explained the project in greater detail. Pam suggests that it would have been helpful to have known more information earlier. She was approached just before her surgery and feels that she could have done with more time to consider things fully. At the same time, she says that having the details earlier would not have affected her decision to take part – she would have merely known about it before her operation and studied it at leisure.

After her operation, Pam carefully studied the information leaflets she was given. She only realised the implications of the commercial use of her DNA data after the samples had been taken, however she isn’t worried about it too much because she feels like it will go to good use – such as making drugs to treat diseases. 

Pam’s main motivation for agreeing to be involved in the study is that she wants to help better understand genetic diseases as well as do anything that can help the health of her children and grandchildren in the future. She has a friend whose daughter died of cystic fibrosis and feels that it would be “absolutely marvellous” if they can start to “rule out” hereditary diseases.

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.

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. 

Having seen her friend’s daughter die of cystic fibrosis at the age of thirty, Pam says if they can find a way to rule out genetic conditions, it would be ‘absolutely marvellous.’

Well anything - anything would be helpful. To help other people. I have a friend whose daughter died from cystic fibrosis. At the age of 30. 

Mmm.

If anything I can do to help sort diseases like that out, which are hereditary, I would be only too pleased to do it. Having personal experience of that.

Mmm.

Which - I went through it with my friend and her husband. And we helped them as much as we could, but you saw how they were suffering with their daughter gradually getting weaker and weaker. And spending more and more time in hospital. She had a heart lung transplant in the end, and anything we could do to help them. We gave them supper every night when they came back from the hospital. But, anything you can do to help people suffering like that. 

Mmm.

In whichever direction where health is concerned, I’m only too delighted to help.

Yeah. And, I mean, how do you feel about being invited to take part in the 100,000 Genomes Project?

Very pleased. Very pleased.

Mmm.

As I say, having had experience of terrible illnesses that get passed from one generation to another, I was only too delighted that I’d got the opportunity to do, to help.

What do you envisage as like the future with genetics and genomic research?

Yeah. Well I just hope that it will give rise to them finding out - although they are already working on it aren’t they, trying to make babies without these hereditary things. Which is, is absolutely amazing. I mean if they can start to rule out hereditary diseases like cystic fibrosis that would be absolutely marvellous. Seeing your good friends suffer by losing a beloved daughter at 30, knowing all her life that she was going to die. I mean that is terrible. And anything that people can do to stop that happening.

Pam signed the consent form before she went in for her breast cancer operation. Although there wasn’t time to read much about it before her operation she trusted the health care team and felt happy to give her written consent.

I wonder whether then you could tell me now how you got involved in the 100,000 Genomes Project?

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.

And what sort of things did she explain to you? Do you remember sort of what she - if you can tell me the details of what she said?

She generally explained what I said - what she was going to do about the blood she would take, and the sample she would take. So that they can analyse them and help, hopefully - you know - give them some help in helping all these awful things.

Yeah, okay. And did she give you any leaflets or were there any?

No she gave me several leaflets, which I read. And learned exactly what they were doing in the Genome Project. And it all sounded really admirable to me, to be doing something like that.

And so you were quite happy with the information that you were given by the nurse? Was she a nurse, or?

No she wasn’t a nurse. Nope, she wasn’t a nurse. Yes, yes. But I - obviously, you can’t study all the leaflets beforehand when you’re just going in for an operation, there wouldn’t have been time. So I didn’t really study them until afterwards, but she told me enough information to make me want to do it.

Yes, so you didn’t feel like you wanted to read them all beforehand?

No, I was absolutely happy to rely on her and what she was telling me.

Pam doesn’t mind her data being shared with commercial companies if it is going to be used to develop medicines linked to the findings of the project.

Was anything said about possible commercial use of your sample? So maybe pharmaceutical?

There was, there was. And I did actually think about that. Because it said for non-commercial purposes, and sometimes for commercial purposes. And I thought about it, and I thought - if they are commercial purposes, I would like to imagine that they are for good commercial purposes. Not just someone trying to make money from them. But doing good things from them.

So, did you agree to that, then? Was that something you agreed to do?

No. I had no idea that this would be used commercially until I read all the details on the paper.

Ah, so it was only afterwards that you realised this?

Yes, yes. 

Yes. And when you just said about good purposes, can you explain that a little bit more? What, what sort of would constitute a good purpose for you?

Well if they were tied up with the results from the tests. So that, say they went to a pharmacological firm, they would be able to make pills or medicines or something that would help whatever they discovered.

Mmm. Yeah. And so you’re happy for pharmaceutical companies to have access to your data, and things like that?

I am, because I can only think that it’s for a good purpose.

Yeah. So creating - so good purpose would be something like creating drugs?

Yes, yes.

Pam doesn’t expect any results and would be happy not to hear from Genomics England. Contacting her is time they could spend doing the study.

And do you expect any results at all?

I don’t, I don’t.

And, and how do you feel about that, if you didn’t hear anything?

I’m quite happy. I’m quite happy about that. 

Yeah.

Anything that reduces the time they have to waste, not doing the experiments and studying the samples and things, you know - it’s fine.

And so you’re quite happy not to hear any more, sort of results?

Quite happy.

Okay. And why do you think - why is that?

Why is it?

Mmm.

Well I don’t think they’d be taking the samples just for fun. They convinced me that they were taking the samples for excellent reasons. And once I’d agreed to do, take part in it, then I was happy to leave it to them. 

Yeah.

They’re more intelligent than me about such things.

Pam was given information about the project shortly before she went into surgery. Ideally, she would have liked more time to study the information before she signed the consent form, even if it was only a few hours.

Would you have liked more time ideally to have before? Or did you think it was a good sort of thing to just do before the operation?

Probably I would’ve liked more time to study the information that I’d got, so that I knew exactly what was going to happen. But she was a very, very nice lady, and she did roughly explain what was going to happen. Not in any great detail of course, but I was - she told me enough to convince me that I was doing a good thing.

Yes. Yeah, okay. And do you have any messages for Genomics England about your experience of taking part in the project?

The only thing I would say would be that it would be nice to know what they plan to do, what I planned to partake in, all the details, a bit earlier. So that I did have the chance to read all the information – 

Yeah.

- So I knew in great detail what was going on. But that’s the only thing. 

Yeah, so you would’ve liked a little bit more time, just to

Yes, yes.

- to digest what you were going to take part in?

Yes, yes I would’ve.

Yeah.

Even if it was only a few hours.