Biobanking

David: So for me there’s always an element of research in everything I do and so I, it doesn’t frighten me when I hear people want to use tissue and blood and things like that for research. That’s how we make progress. And it is to the overall benefit of mankind, so good, I’m glad about that. And if I can get some benefit out of it as well, well, there’s a double bonus, yes.

Jean: The thought of just sitting, waiting for the disease to take over seemed very alien. And so I thought the only proactive thing that I could do about the disease was maybe to take part in any research. I wanted to do something, and I read about the MND DNA bank. And it said they could take blood from anybody, and I thought, “Well, at least that’s something I could do.”

Julie: So the clinic sent me to see the research midwives. The research midwives thought for about 10 seconds and said, “Oh well, here’s one that you’re qualified for.” And I came into the category of a slightly higher risk pregnancy because of having had IVF. And the research midwives were terribly apologetic that this would involve an extra blood test and an extra urine test every month, and a bit of going out of the way on my part, and I reassured them that I was very, very happy to do all of this.

Elaine: There have been times where I can remember one time reading something and I’m thinking, “Oh God, I don’t really understand that.  That sounds quite invasive.”  But I talked it through with a nurse that I know, and when she explained it to me I thought, “Actually, it’s not that bad.”  So I suppose that it could be off-putting to people when you get, you know, a big wad of paper and it’s all medical terms. But the fact that if you do, if you are unsure, do talk it through with somebody because you’ll get a better idea.

Christine: For anybody that’s asked to take part I would say I don’t think you’re going to come to any harm by it. You might hopefully be helping somebody else in society. It might be 30 years away from now, but it would be nice to look back and think that, you know, maybe for your children, your grandchildren, to say, “My grandma helped me, you know. I’ve now got something wrong, but if it wasn’t for her efforts there may not be a cure.” Because I like to think that everything I do is helping somebody get cured of something eventually.