Los centros de acogida para niños en estado de vulnerabilidad en Pereira.

We have already seen how the scientists participate in reproducing a particular image of genetic research through their participation on the tours. In this section, I examine their experience of this event in more detail to illustrate the dense interconnections between the scientists, BRCA genetic research and the fundraisers’ quest.

The difficulties of the tours for the scientists became apparent fairly early on in my research, during informal discussions with some of the Charity’s staff. Talking about the very first tour that had taken place, Susan told me how many of the scientists had been anxious about the way in which fundraisers would respond and were worried that they might, as she put it, ‘burst into tears or get upset or ask when they would find a cure for cancer or why they hadn’t a l r e a d y In-depth

interviews with scientists as well as discussions with them during and following the tours enabled the nature of this anxiety to be explored further. For example, a number of scientists talked about the ‘mixed’ feelings they had about this event.

Elaine/I’m not sure how good they actually are, in some ways. I've taken a few people around and it’s quite difficult to know what to say. These people, they’ve obviously had relatives who've... and they obviously want to do something and raise money. So you take them around and show them these pieces o f equipment and say they cost thousands o f pounds and they've only raised 2,000 pounds. They're going to go away and think it’s not enough. Andrew/I don’t know what they want out o f it. I enjoy people coming around to show them what’s going on but I always wonder what people get out o f it. It’s nice for them to see the building and know that it exists but as to what they

Nevertheless she recalled that ‘in fact although a few people did get upset, it went surprisingly well and the scientists afterwards said they were grateful that they’d been given a chance to talk to people and to see how much difference it made to their work’.

take away from that or how much they want to take away from that. I guess the bottom line is when are we going to see a cure. At least that is what I would want to know if I had a relative with the disease or I was at risk , those would be the mental calculations I would be doing as I was going around the centre. Even though nobody ever says that, I guess that’s what they want to know and that’s enormous.

For both Elaine and Andrew, the tour evidently brought them face to face with the expectations and motivations of fundraisers in a way that was not always comfortable, given the complex and long term nature of the research they were engaged in. The very personal consequences of this unease was brought home in a discussion I had with one individual about her concerns regarding the

fundraiser’s ‘impression’ of them on the tour.

Christine/ I think they think that we are all highly motivated, highly driven and we are all going to make them much better. I would just hate to let them all down, we won't, but it’s not going to happen probably in their lifetimes. I think they're all impressed by the building, it is an incredibly impressive building. I imagine that most people haven't even been into a lab before and they are probably just a bit over-awed by that really

Sahra/ Yes that’s true, but my feeling is that often the scientists seem fairly relaxed in the labs?

Christine/Well it isn't always like that but to a certain extent it has to be. Do you think that impresses them or do you think they think we should be running around?

Sahra/No I suppose the ‘TV image’ o f scientists is really different

Christine/1 hate that and we've all got high foreheads and lab coats buttoned up to here (laughing). But do you think they want to see people with big foreheads, and spectacles beavering away?*^^

My discussion with Christine suggested that the expectations of fundraisers had implications for the way scientists presented themselves on the tours. Another member of the research team suggested that this event also had consequences for the way they presented their work, pointing out that the fundraiser’s ‘expect to see bucket loads o f DNA lying around’. This was more clearly articulated by one scientist,

in pointing out how the structure of the tours served to present a somewhat one dimensional view of their work.

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This anxiety was also reflected in what another scientists said:

Elaine/ If I was going to see a scientist I would expect to see people in lab coats rather than playing music and chatting, I don't know people have this idea of scientists having a solitary existence tucked away in the comer with their lab coats on doing their own thing., and its not like that at all.

I don't know, just to wander around how useful that is, because one science lab is going to look the same as any other and they're just not going to have any idea what we are doing or what we are researching into just by looking at test tubes on the bench. But maybe what they want to see differs from what we might want to show them. A lot o f the time what they want to see might be the hardware which their money has bought, say the microscopes or the micro­ injector. That’s something physical and something incredibly expensive which actually takes a lot o f hard work to raise the money to buy. This is different perhaps from what we want to show them which is a few cells in a tiny plastic dish which is much more important to us. I mean the hardware is just a means to an end. A PCR machine is perhaps a bit like a microwave, its got no essential interest on its own, you can't do your ‘cooking’ without i t . But for us it’s the food at the end o f the day which is important rather than the machinery or microwave or whatever that you ‘cook’ it with.

Alsana’s comments highlighted how the focus on the objects and tools of science during the course of the tours prevented the scientists from highlighting the less visible aspects of their work. From what she said it seemed these less visible aspects were deeply connected with their ‘ideas’. She implied therefore that these events required a certain presentation not only of their work but also of themselves; a display that involved a certain loss of subjectivity. This was echoed in what Andrew said about the first ever tour that had taken place at the centre.

There was a strong emotional response to seeing this thing and a lot o f them had been involved from the beginning and it was quite a big thing. So I wasn't to them an individual, I was just part o f this whole thing that this money had created.*^*

These comments implied that some scientists experienced the tours in terms of something of a negation of their work and their ‘identities’, particularly when this was defined by an interest in and a ‘passion’ for complexity. This was not only because of the way this event focused on the objects of science, but because they themselves and the genetic research they undertook were situated as

objectifications of the fundraisers pursuit of a ‘redemptory’ science.

Although initially flummoxed when I asked him how this ‘made him feel’, he rallied after pausing for a few moments with what he clearly felt was an ‘appropriate’ response. This nonetheless revealed much about the not necessarily welcome obligations of being a scientist in this domain of research.

Andrew/ Oh I don’t know I didn't really think about it... no hold on let me think back it gives you a feeling of responsibility... because it reminds you that this money why they raised this money and what it means to them and that you've got a responsibility to use this money.

Their reluctance to being reproduced as embodied objects of expertise was sometimes apparent during the tours as two ‘rare’ moments of fractious interchange between the scientists and the fundraisers illustrate.

I am with a group of fundraisers walking around the various labs. We have just been through one of several that appear to be empty at the moment. Nicole, the research administrator, begins to talk about the amount of money needed to continue to fund the research now that the centre has been set up. She says that the centre is going to need about ‘5 million per year’ for the next few years

during which the labs should start to fill up with scientists. One of the

fundraisers asks her if this money is already there or if they raised more money would that fill the labs up more quickly. Nicole’s response is terse. She explains that ‘no that’s not really the issue here’. She explains that it’s about

getting the right people in. ‘You see’ she explains ‘ it needs to be an attractive place for them to work, we have to encourage them to want to work here. It’s not just the fact it’s a Charity for them, it’s about their careers as well.’ She points out how, as a result, recruitment will take place over the next 2-3 years and just can’t be any sooner than that.

In this example the sharp reply to the fundraiser’s query threw into relief the agency and individuality of the scientists in a way that ran counter to the way they were normally perceived by fundraisers and represented in the Charity or on the tours. It was an explanation that also seemed directly linked to the unease some scientists had privately expressed about how they experienced the

laboratory tours.

The second instance concerned a fracas over something seemingly innocuous, lab coats. As well as having a very practical function in the labs associated with health and safety, these objects are also an iconic symbol of authority within the scientific and medical community. It was perhaps the former that was at the forefront of the scientists mind at the start of the tours when they made their

The Charity also participated in this process. For instance the Charity’s research centre brochure used particular imagery and discourse about the scientists. In the information about donating to the Charity at the back of the brochure, the cost of various ‘objects’ used in scientific practice is listed, which, as we have already seen in the context of the tour, are treated as objects of awe and wonder. However, next to the cost of these objects, the cost of funding a scientist for a year is also listed. This sense of ‘objectification’ is further reinforced by the imagery on the front cover of the brochure. This comprises of a series of 12 graphic images spread out across covers and representing a time line from when the Charity was first set up and plans for the centre made to when the first scientists started work there. The first image consists of a few black and white lines. As these images transform across the page, the first becomes recognizable as an empty room in a lab. This is gradually transformed into a recognizable science space, with the tools and the objects of science. The final colour image is of a young female scientist pipetting some liquid. In this representational sequence on the brochure cover, scientists seem to be represented as the apex of an end goal, embodiments themselves of knowledge and expertise.

appearance in their white coats, as if hot off the lab benches. However, it was the absence of a lab coat on a ‘working’ scientist during the course of this event which upset one fundraiser and prompted this revealing interchange.

It is near the end of the tour, there is a question and answer session. One fundraiser says that she was ‘worried’ by the person in the lab without a white

coat adding that ‘having worked in a laboratory m yself in the past I know how essential it is that those working in the lab wear coats at all times’. The staff from the

offices of the Charity are suitably placatory, pointing out that the particular scientist in question had been wrong in neglecting to do this. However, in an aside out of earshot of one of the fundraisers, the scientist conducting the tour was outraged. She says that the particular task the scientist was completing did not require a lab coat and that if there were any concerns about health and safety they should have been directed at the female fundraiser who had brought her baby into the laboratory.

At one level this minor dispute seems to be about a relatively petty issue. But, I would suggest, the scientists’ unwillingness to concede the terms on which lab coats should be worn also reflected a feeling that their subjective right to define the terms of their expertise was often denied to them in the course of this event and in relation to the research work of the Charity more generally. These tense but rare encounters draw attention to the uneasy consequences for scientists and the work that they did in being caught up in a ‘quest’ for knowledge of a particularly redemptory kind.*"^*

7.3 Conclusion

The experience of scientists who increasingly must communicate with ‘patient’ or ‘lay’ groups beyond the confines of the laboratory, has only just begun to be explored in social and anthropological work. Heath’s discussion of the ‘traffic’

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Another attempt to counter their sense of objectification seemed to be demonstrated in the way that the atmosphere within the labs themselves was sometimes almost deliberately relaxed, against the background of the formal structure of the toims. Music would often be playing and scientists chatting to each other in what appeared to be a conscious attempt to counteract the enforced formal representation of expertise that the tour required. This was also reflected in what one scientist said about the opportunity the tours provided to show fundraisers what a lab, scientists and science was ‘really’ like.

Gillian/1 think it is good for them to come and see what a lab is like, because many people have misconceptions about labs and lab scientists. I think it is good for them to see that we are relatively normal.

This was also illustrated in the way there was a demand for the scientists to be ‘committed’ to their work. For instance one fundraiser meeting the scientists more informally over coffee after the tour treated one of the scientists almost semi-reverentially talking about how she really admired their ‘dedication’ and couldn’t understand the kind of ‘commitment’ this work required. This was also demonstrated in an appeal leaflet, produced by the charity which used a notion of the scientists ‘dedication’ , described in terms of them ‘giving 150%’, as a baseline for what was needed in terms of funds from the public.

that flows between a group of patients with Marfan Syndrome and the scientists in the US who research the disease draws attention to the ‘contradictory

connections and divisions that describe the networks linking [the] laboratory researcher to wider worlds'(1997: 79). She explores how patient groups desire for a therapeutic outcome is ‘disturbing’ for those involved in basic science research and how they express a need to be ‘autonomous’ in the work that they do (1997). Similar discontinuities (as well as dissimilar continuities) characterise the relationship between ‘lay/patient’ groups and researchers carrying out basic science genetic research in the social arena of a Breast Cancer Research Charity. Here there is an expectation of not just or simply ‘therapy’ but ‘cure’.

This nexus of connection and disconnection has been explored here in particular ways. Taking one key event where the communication of the genetic research is central I have initially examined how the monthly laboratory tours reproduce a particularly ‘enchanted’ image of scientific research. That is for the most part

‘knowledge’ is maintained as authoritative and expert. The ‘show lab’ suggests however that this ‘performance’ is subject to slippage.

Exploring the experiences of one group of participants in this event, the scientists, the second half of this chapter has drawn attention to the contradictory

consequences of being involved in the transmission of new genetic knowledge associated with breast cancer. Carrying out basic science research on BRCA genes helps to make knowledge and expertise ‘tangible’. This is a context for knowledge some scientists reproduce by talking about ‘genes’ in particular de- contextualised ways (Oudshoom 1994), thereby preserving the importance of a molecular approach to breast cancer research. But scientists also make use of a

‘social dimension’ drawing on the ‘morality’ of breast cancer to highlight the value of their work both informally and more ‘publicly’. Others talked openly about the complexity of the gene research they worked on and the way that it was precisely this feature of basic science work which fascinated and motivated them . However, we can see that admitting to or acknowledging the complexity of this work also draws attention to the timescale of translational research and the current limited clinical application of BRCA genetics.

Although some scientists suggested that this might pose problems for the Charity,

the final section of this chapter, exploring the scientists’ experience of the tours, suggests they are not so easily separated from such consequences. Coming face to face with the expectations of fundraisers during this event, particularly in the context of the show lab, not only made many uncomfortable, but also

precipitated concerns about how they should present themselves and their work.