Richard

Age at interview: 73

Age at diagnosis: 73

Brief Outline:

Richard had bladder cancer which later affected his kidneys. He has had his left kidney and part of his right kidney removed during surgery. His consultant invited him to take part in the 100,000 Genomes Project.

Background:

Richard is a retired café/restaurant owner. He lives with his wife, and they have two grown-up daughters. He is white English.

More about me...

Richard had bladder cancer and later was told the cancer had affected his kidneys.  He had surgery to remove his left kidney and later, part of his right kidney was also removed. His consultant invited him to take part in the 100,000 Genomes Project and he received a letter of invitation from the hospital’s Genetics Department.

Richard was happy to take part in the 100,000 Genomes Project. He saw it as his civic duty to help medical research and to try to find answers to diseases like cancer and advance the development of effective treatments. He doesn’t think that he or his family will directly benefit from the project’s finding, but feels that advancing an understanding of cancer will benefit society and people in general.

Participating in the project was Richard’s first experience of taking part in medical research. He said he was provided with all the information but admitted he didn’t read it all. Later, after his first pre-op appointment he met a research nurse who explained everything in detail - including the content of the consent form - before he was asked to sign. Richard has no concerns about any aspect of his participation in the genomic research. Donating tissue and blood samples “was not a big deal”. Since it was a while since he had participated, Richard couldn’t remember many details about his experience. He feels that it would have been better if he had been interviewed soon after he took part in the project.

Richard thought the written information was “self-explanatory” and didn’t feel he needed to read through it. It was explained to him and he felt the project was worthwhile..

And what information were you given about the project? Were you sent a leaflet explaining everything or did you see a nurse?

Yeah I’ve got a participant information sheet here which to be honest I haven’t read [laugh].

Ok, why? Can I ask why?

[Ha] well I just, you know, it was. I am just looking at it now we’re on the phone. Obviously it’s, it’s sort of a self-explanatory. I thought to start with and I have agreed to it and the rest is some silly thing tucked away in the small print saying, “We want your body when you’ve finished with it. I can’t see a problem.

[Laugh] ok that would have been a problem for you? [Laugh.]

Yeah. Well it might. I don’t know actually. I don’t know whether it would. I might have been quite happy [ha].

[Laugh] ok a little bit of you was ok?

Ok.

Ok. So you didn’t read it and because you thought, - I mean you, you believe in what they were asking you to do. Ok. So at what stage did you talk to the nurse or to the doctor and gave your consent?

[Ohhh] Oh I see, 2nd of second of February I have this consent form when I saw somebody from Genome at [Name] Hospital when I went, as I say, for my pre-med.

Ok and did they go through that patient information leaflet with you or?

I think they probably did actually yeah, yeah.

Ok.

In fact I’m sure they did. I just, you know, [ha] I just, well yeah, yeah they did but I didn’t particularly read it. I just listened to them. 

Ok, ok. Did you have any questions or any queries?

To be honest I don’t think I did. I just said was it, you know, more or less what we’ve been talking about. Was it going to help and what were the results and, you know, but doesn’t. You know I think it’s a long term, obviously a long term thing and, you know, probably won’t know much about it for some time.

Richard sees participation as something that will help future generations, rather than having a direct benefit to him. He feels that anybody given the chance to take part should see it as a duty.

I’m not sure there is any thing to do with me or my family is it? I think it’s more of a long term benefit to possibly the understanding of, as I say, the condition to society or people in general. It may well not prove come to fruition for another, I don’t know, ten years or more. Or maybe longer who knows. I suppose it’s just a question of keeping results or monitoring people and, you know, that’s it. I’m quite easy with whatever the results are.

I think it is one of those things that anybody given the chance should as a duty rather than as a, what’s the word that I am searching for, you know, just as a whim. I think it’s something that given the chance we should do if we, if we can help anybody else with it.

Richard says that anything that helps anybody else in a similar position must be good.

Well yes, just take part. There’s no point in not doing basically especially if you have [ha]. I mean my condition at the moment is [sigh] how do I put it. Is not life-threatening at the moment but you never know. It could come back of course. I’ve got a tumour in my bladder that’s come back and I’m going in to hospital again to have that dealt with but that’s not a, a particularly worrying one. It’s just if it, anything comes back into the kidney or part of the kidney that I have left. So, you know, anything that helps anybody else with a similar position, you know, it must be good.