Ruth - Interview 19

Brief Outline: Ruth donated stem cells from her umbilical cord for medical research after giving birth to her son.

Background: Ruth works in health research management. She is married and has one son. Ethnic background' White British.

More about me...

 

Ruth donated stem cells from her umbilical cord for medical research after giving birth to her son. She decided she would be willing to do this after seeing a recruitment poster during her 18 week scan appointment. Ruth took an information sheet home with her and then informed her midwife that she would like to take part. This was then recorded in her notes. Ruth explains that the poster and the information sheet were quite clear and easy to understand. Although she was not entirely sure of the specific details of the project she had read a lot around stem cell research and felt in general it was a worthy cause. On reflection she also feels it is more ethical to take stem cells from umbilical cords than aborted fetuses, and explains how this opinion has strengthened since becoming a mother. 

 

Since the 18 week scan when Ruth first expressed willingness to donate her umbilical cord she heard nothing more about it until shortly before the birth when she signed consent. While Ruth was pregnant she had pre-eclampsia and so spent a fair bit of time in hospital before the birth. At 36 weeks it was planned that Ruth would have an early induction however there were complications and she ended up having an emergency caesarean. Once Ruth had come round after the birth she checked with her husband to make sure the umbilical cord was taken. 

 

When discussing her reasons for donating stem cells from her umbilical cord she explains how it did not impinge upon her in any way and says “they’re only going to chuck it away anyway, so why not do it?” She has also taken part in previous biobanking research where she has donated blood for projects on diabetes and genetics. There are certain factors which determine her willingness to take part in such studies. Firstly she is more willing to donate to the NHS and universities because they’re for the general good or education purposes. She is less likely to donate to private companies as she is aware they would be profiting. Secondly she would be less willing to donate stem cells from more invasive areas such as bone marrow as this would be require more effort and discomfort but adds that if it was for a family member then she absolutely would do this. Thirdly she would be more cautious about giving personal details such as medical records and would have to be confident of the data protection beforehand. 

 

Ruth’s attitude towards taking part in biobanking is that it is not a big deal; she takes part for the greater good and because she does not see a reason not to as she feels it doesn’t really affect her life. Ruth explains that she does not personally benefit from taking part but would not expect to and she is completely happy about this. 

 

 

Ruth would prefer her data to be used for educational and NHS uses rather than by private companies.

Does it depend also on whether it’s the NHS or a university or a commercial organisation?

 

I think personally I’d probably be more willing to give for educational purposes and for NHS research rather than private companies. But it does, again it does depend on, you know, if it’s a big deal, if it takes a lot of time, if you have to do anything on top or you have, there’s some follow up or anything like that. And again, if it was a private company, because it’s a private company the profits stay within a private company therefore you’d probably expect to be paid to be frank, if you were going to do that. Right, whereas if it’s the NHS it’s sort of that greater good experience.

As far as she was concerned, the umbilical cord blood Ruth was donating was a by-product of giving birth. She felt she would have liked more interaction with staff if her donation required more effort on her part.

It was just, it was very matter of fact. It was, “Oh, yes, right OK, no problem”.

 

When I said I wanted to do this. Hm, that was my midwife’s reaction. And certainly when I brought it up before when the, I sorted of prompted and said “I’ve signed up for...” I, actually I do remember when I was being induced I said, before the consent forms came round and everything I just said, “I have signed up to donating my stem cells” and they went, “Oh yes, right, yes, I’ve got that in your notes”. But it, that was it, that was the whole reaction that you got from the professionals. There was no, “Oh good for you” or anything like that, there wasn’t anything. No.

 

Would you have liked…

 

No.

 

…more?

 

No.

 

No?

 

It didn’t bother me. It wasn’t the main focus. You know, I was too worried about [laughs] about delivering and having a baby that, to actually really worry about that so it wasn’t, no, it wasn’t a big issue.

 

I mean, maybe if you were doing something that, you know, my primary concern at that time was, was having my baby so that was really my main focus. I did happen to remember that I’d said, you know, “I have signed up to this and, you know, this is going to be done, isn’t it?” And I think I did that because everything was going so badly with my planned birth plan and everything like that that, you know, nothing went according to plan and, you know, being in hospital, delivering early having an emergency caesarean, nothing went according to schedule. So I think, I probably remembered more about it and brought it up as a point because everything else was going so badly [laughs] and I had a bit more control over this. But I think, you know, if it was a donation and other circumstances where birth wasn’t the main focus I probably would have want, maybe wanted a bit more interaction from, from health professionals. Hm, yeah, possibly.

Ruth was approached at work to take part in a biobanking project. She had to give a brief family history.

I gave blood for a diabetes research project, but it was a long time ago and I really can’t remember any details. And then because I work in the health, the health field, education, health education, I’ve been approached by a colleague at work, and happened to be approached while I was making a cup of tea in the kitchen, you know, and she said, “Oh, we’re trying to get people to give some blood for a study that we’re doing”. And I said, “Sure, no problem.” So again, [chuckles] had an information sheet, read it, got, took a load of blood from, and I think that was being used to - it was, it was a genetics research project, so they were checking for a lot of things. I think it was sort of genealogies and genetics for genealogy, so working out what genes follow down certain lines and various things like that.

 

So did that involve giving some family history, answering questions about your family?

 

Very brief family history. I think it had where I was born, where my - actually I think I did – yes, I think I had to put down where my dad and where my mum was born. But that was it. It wasn’t very much.

 

No, so they didn’t want to know about prior history of …

 

No.

 

.. heart disease and…

 

No.

 

.. all that sort of thing?

 

No.

 

No?

 

None of that.

 

OK.

 

And I think to a certain extent I think they were sort of almost using a lot of them as sort of blind trials, so to see what the blood itself showed up. But again it was just one of those things. It wasn’t, it wasn’t going to take any time out of my day You know, I think I was actually having blood drawn and I was on the telephone at the same time, so [laughs] I really, it really wasn’t a big deal. And because it wasn’t a big deal I really can’t remember much about it. And it wasn’t one of those things I’d thought about, whereas I’d actually thought about the stem, donating stem cells….

 

Yeah.

 

… before and it was something I believed in and I thought was a very good idea. 

Ruth explained that there was a telephone number to contact the researcher on the information sheet.

I felt I’d given, been given plenty of information on the sheet, and I thought, you know, I give blood, I’ve donated blood and various things to other research projects at various points. I’ve got no problem with, you know, furthering research. And I just thought, you know, it would only end up in the bin if I didn’t, so why not? And so I really had no problem with the consent issue. It, even though it was a long time since I had the leaflet. There was a telephone number that you could ring up and ask for further information if you wanted any more details. But I didn’t feel I needed them. So …

 

So they took consent quite a long time after you’d first read the information?

 

Yes. Yeah. I’m not sure, I mean, from, from what I remember - I didn’t keep the information leaflet unfortunately - but I don’t think it was the national database that I signed up for. I think it was a local bio-banking for local research, rather than a national one, because I don’t think they do the national one in our centre - yet. I mean, they may well do soon but yeah.

 

It was a long gap in between. But I had brought it up a couple of times with my midwife and you know, when I saw her at my antenatal appointment I mentioned the fact that I’d read this leaflet and I really wanted to do it, and she put it in my notes. And so anybody seeing the notes was aware that I wanted to do this.

 

And they just said it was very simple, if you didn’t want to consent, if you wanted to un-consent, all you had to do was just let them know, or decide not to sign the form just before you gave birth.

Ruth says she would take medication that was developed using animal testing. However, she is uncomfortable with certain animals being used in research.

I’d like to think of myself as a person who wouldn’t want to cause any, any undue suffering to another person or animal …

 

...but without the use of animal testing there are a lot of drugs that would never have been developed and that save hundreds of thousands of lives and I would be the first one in the queue if I developed one of these conditions and so, you know, I’d want to take the benefit of having had that research so it would be a little bit hypocritical of me to say, “No, I, I don’t believe in animal testing”. There is some, I think there’s a level of animal testing, I think, you know, I do, I find it much more uncomfortable with primates them testing with primates, I have to say because I, you know, they’re so much nearer us in kinship that say rabbits and rats. Than, and it just, when you, when you see it on television, on documentaries and things like that you go, “Ooh, I’m not sure if I yeah, really like the idea of cutting into chimps’ brain.” But, again, if it was, you know, if they develop Alzheimer’s drugs from doing that, you know, helped hundreds of thousands of people then again I’d be the first one in the queue and my, again my moral avenues of that would go out of the window.

Donating cord blood, which Ruth sees as a by-product of having her baby, is 'a much kinder way' of harvesting cells for stem cell research. Her views have changed since she became a mother.

What are your wider thoughts about medical research?

 

It’s very different, difficult actually. I have to say probably my view on that particular issue has changed since I’ve had a baby. I think before it probably didn’t bother me that stem cells were maybe used from aborted or terminated fetuses. But I suppose, I don’t know I’d, I think part of becoming a mother you sort of develop the, there are certain things you just wouldn’t consider and I do certainly understand the benefit and of them being able to have stem cells to research on but, you know, if they can get them and they’re as good a quality and good for, as good for research as from, using from aborted fetuses then this is much, much more a kinder ethical way of doing it rather than, and so yes, I’d be more keen to push that area.

 

You can give live stem cell transplants as well. I’ve read, I’ve read on that. But that involves a lot more work on your part [laughs]. So you’d have to seriously think about what you would have to do for that.

 

They take them from bone marrow?

 

Yes.

 

Or …

 

Yeah.

 

Which is quite invasive. So I’d think twice about that whereas giving cord blood, as I said, it was a by-product of having a baby and therefore it wasn’t anything I had to do as such.

 

It was very, very easy.

Ruth volunteered to donate umbilical cord blood for stem cell research when she delivered her baby. She said there was no personal benefit for her and asks, 'Why not do it?'

So the, I mean, the information sheet was quite self-explanatory. I mean, it basically said what they wanted to use the stem cells for and said that they wanted it for research to - well just for research purposes, I think. It wasn’t very, it wasn’t specific as to what they were researching into, but from all the reading that I’ve done and I sort of know what they’re doing research on stem cells for, and so I didn’t have any problem with that whatsoever. And all they were asking to do was basically collect the placenta – well, the umbilical cord, because it’s cord blood - once you’ve given birth, and you give a blood test and that’s it. And it’s very, very, there’s no intervention, there’s no - nobody’s harmed. There are no fetuses aborted, nothing like that, and so I didn’t have any objection to it whatsoever. I thought, “Well, you know, they’re only going to chuck it away anyway, so why not do it?” 

Whilst attending a hospital appointment, Ruth saw a poster advertising a research study. She then volunteered to donate umbilical cord blood for stem cell research when she delivered her baby.

I was going for my 18 week fetal anomaly scan and while I was booking in at the hospital there was a sign on the side of the booking-in desk which was basically requesting people to donate their stem cells. So I had a look at the leaflet on the wall, and asked for a, a patient information sheet and took that home. And that was the end of it for till I had my next antenatal visit with my midwife, at which I discussed the fact that I’d seen this, read the information sheet and thought that I’d like to do it. And she put that in my notes. And so it went down on my notes and I completely forgot about it. 

Ruth thinks the media always sensationalise stories.

Well the media always tends to go for a sensational aspect. The shock-horror story and this was done badly or hallelujah this done fabulously. They’re not very good about portraying a moderate view on how things are actually done and I think, I suppose, because working within a health field I see medical research going on all around me in various forms I’ve got a better understanding than maybe somebody that doesn’t work in this particular field. So, you know, I think a lot of what’s written in the media is a load of bunkum.

Ruth was happy to donate organs for transplant, but did not want to be 'cut up' for research purposes unless she had to have an autopsy anyway.

What about donating organs after death? And I’m thinking about for research as opposed to for transplant.

 

That’s an interesting one, I think certainly, my husband and I have discussed donating organs for transplant and we recently discussed it because we got a leaflet for to consider whether we’d sign our son up to the transplant list or sign, sign him up to the national register. And so we had a discussion and we talked about that. And basically I think both of our views is we were on the same level that we didn’t have an objection to donating organs after our death for other use. But for medical purposes I don’t know. I mean, [sighs] if it was, I wouldn’t, I think [sighs] if I died and there was going to be an autopsy and I was going to be cut up anyway, I don’t think there would be any problem with donating something at that particular time. But if I was a whole body, I think to cut it up for that particular, I think that, that sort of fine line, that’s, that’s a funny, yeah.

 

Yes, if I’d been not going to have an autopsy then I don’t think that I would want them to cut me up specifically for that.

Ruth signed a consent form quite a while before she took part in the project. However, she knew she could withdraw from the study at any time.

Before they induced me they, I did sign a form. I remember signing a consent form to say that they, they could take my stem cells and also if I needed any other further intervention due to the pregnancy and possible caesarean, I signed those then. And I think they took, they took a blood test after, I think - yes, after I’d had my caesarean, but I really wasn’t very compos mentis at that stage [laughs] because I’d had an epidural and rather a lot of gas and air. So little bit hazy on those details [laughs].

 

So they took consent quite a long time after you’d first read the information?

 

Yes. Yeah. I’m not sure, I mean, from what I remember - I didn’t keep the information leaflet unfortunately - but I don’t think it was the national database that I signed up for. I think it was a local bio-banking for local research, rather than a national one, because I don’t think they do the national one in our centre - yet. I mean, they may well do soon but yeah.

 

I mean, I suppose, I’m just interested in this gap…

 

Mm.

 

… between when they gave you the leaflet, which was sort of 18 weeks in …

 

Yes.

 

.. and then you don’t sign consent till some time later?

 

I signed consent just before I gave birth.

 

Basically. Well, when George was delivered, yeah. It was a long gap in between. But I had brought it up a couple of times with my midwife and you know, when I saw her at my antenatal appointment I mentioned the fact that I’d read this leaflet and I really wanted to do it, and she put it in my notes. And so anybody seeing the notes was aware that I wanted to do this.

 

And they just said it was very simple, if you didn’t want to consent, if you wanted to un-consent, all you had to do was just let them know, or decide not to sign the form just before you gave birth.

 

I mean, it, there was a long, there was quite a gap before - I mean, it sounds as if I was signing just as they were wheeling me into the operating theatre - but it was, it was about eight hours before, so I was fully compos mentis. And I actually, I remember coming out, when I came out of the anaesthetic, talking to my husband. I said, “They did do the stem cell thing, didn’t they?” And he said, “Yes, they did.”

 

Did you feel you could still remember enough about what was in the leaflet and what you’d consented to?

 

Yes. Yes. I mean, it, because you weren’t really consenting to very much. All you were, I mean, it literally was they were going to take it off after you gave birth, and you gave a blood test at, you know, at the same time, and then that was, that was it. So there really wasn’t very much that you had to do, and so it wasn’t something that I felt I needed to revisit at any time. I felt I’d given, been given plenty of information on the sheet, and I thought, you know, I give blood, I’ve donated blood and various things to other research projects at various points. I’ve got no problem with, you know, furthering research. And I just thought, you know, it would only end up in the bin if I didn’t, so why not?

 

And so I really had no problem with the consent issue. It, even though it was a long time since I had the leaflet. There was a telephone number that you could ring up and ask for further information if you wanted any more details. But I didn’t feel I needed them. So…