1. MARCO REFERENCIAL
2.3. DERECHO CONSTITUCIONAL A LA IDENTIDAD
2.3.2. Definición
Most of those I met were working in a variety of ways with projects associated with the BRCA g e n e s . N o t unsurprisingly, therefore, when I asked them to tell me a bit about their research, it was the role of genetic factors in the aetiology of breast cancer that was highlighted. For some, being able to talk about their work in terms of a group of very specific genes that had recently been identified and which were already having an impact in a clinical setting was, to a certain extent, enabling.
For example, asking scientists the same question I had asked fundraisers about what they perceived as the main risk factors for breast cancer elicited what seemed like similar responses. Like fundraisers, some scientists initially responded by drawing a sharp contrast between ‘possible and ‘known’ risk factors.
Andrew/The main thing is basically we don't know, unless it’s a hereditary pre disposition and an inherited mutation in those genes[...] just in terms of thinking o f the high penetrance o f those genes there is 85% certainty where as the other things aren't as certain.
The way that genes provided a concrete avenue for researching the causes of breast cancer was also mirrored in what Anna said, one of a few scientists I met who had had personal experience of breast cancer in her family.
There were one or two other teams in the research centre looking at different aspects of basic science research, such as the effect of oestrogen on breast cells and since this time other teams have been set up that are less exclusively focused BRCA genes. However the molecular science focus of the research work of the Charity remains predominant.
Well there has been lots o f research looking into diet and whatever and all kinds o f environmental things. On their own they don't give rise to breast cancer they have to be combined with genetic changes
The importance of examining genetic changes was also demonstrated in the way that genes were imbued with a great deal of agency by scientists. This seemed to be illustrated in the quick retort of one scientist when I commented on
something he had said about cancer being linked to a range of genetic factors. His reply seemed to confer a certain animistic quality to genes.
Yes that’s right, one from each group has to give up the ghost eventually.
In fact the agency of genes was preserved in other ways. For example, factors ‘internal’ to the cell, or genes or bodies were represented by some of these scientists as the most important elements of breast cancer research. This became apparent during a interview with one scientist when I asked if he was aware of other research looking at breast cancer. As this excerpt from my interview with him shows, this prompted something of an indignant response:
Andrew/ what do you mean? Do I think about it, ..um I’m for it ! In fact I would think of the question in a broader sense, I get the impression that this is a common misconception that if you work on breast cancer you’re not working on any other cancer. But the BRCA2 gene is mutated in other cancers not just breast cancer.
Sahra/ so you would see the work at the centre connecting with other types of research looking at cancer genetics rather than say research looking at diet, environment and lifestyle.
Andrew/For me the diet and lifestyle research ..well...of course there are good scientists and bad scientists, but if you really want to understand that research whether it’s actually complete rubbish or not, you have to have a very good understanding o f the field. You’re talking more about prevention than cure, once you've got cancer you’re not going to cure it with things like diet. So really I suppose this work [at the centre] doesn't impinge on lifestyle stuff.
His redress to my query was to suggest that gene research would impact on other cancers and not just breast cancer, rather than making connections with a broader field of research, which I then proceeded to define. At the same time, he
sidelined, and to a certain extent undermined research examining ‘external’ risk factors. This displacement was also evident in the way he talked about the difficulties of incorporating lifestyle factors into risk assessment.
Andrew/ as you can imagine it’s very difficult to study things like lifestyle, to do a proper study. But for these genetic factors you just do people's family trees, you can't factor in food to that or it’s not easy to see how you might do it.
My discussion with Andrew drew attention to how some scientists
simultaneously preserved the agency of genes and, by extension, their research work by presenting genetic factors, or things internal to cells or the body, as the most important or feasible areas of research. This could be seen as akin to a process of striving for ‘universal de-contextualisation’ that Oudshoom has noted in the way scientists involved in researching sex hormones ‘naturalise’ their research by defining it in certain ways (1994). However the reference in Andrew’s comments to a tool, the family tree, normally reserved for clinical practice, suggests that genes also provided ‘evidence’ of expertise for some scientists in other ways. This was demonstrated in his response to one of the first questions I asked during my interview with him.
Sahra/ How you would explain the kind o f work that you are doing here for the Charity?
Andrew/ Ok well I think about 5% o f breast cancers are due to inherited susceptibility. So we've been busy just trying to find out just what it [BRCA2] does because if you can find out what it does we might be able to use it so that the people who have got the mutation can get therapies. It’s work like this that will provide the cure .. because then you can tailor therapies .
Although my question did not require a ‘medically’ orientated reply, he seemed keen to provide one, illustrating his desire to draw attention to the clinical end point of the work he was doing. For some scientists, working on the BRCA genes provided an apparently obvious connection to a clinical world and hence further proof of the utility and worth of genetic knowledge. However, it was not just that a clinical domain could be incorporated into descriptions of basic
science research in this setting, but that working with these genes meant connections could also be made to a particular realm of social relations. For example this was the way one scientist described the project he was involved in:
Tim/ It’s really looking into how we think about BRCA2. It’s normal function is to keep our genetic template clean and intact. But when it’s not working and there are permutations in the gene, then the ability to keep the genetic code accurate from mother cell, to daughter cell and granddaughter cell all along the line becomes damaged and therefore you start passing on the bogus
blueprint to your daughter. So it’s looking at how that actually happens, (my
emphasis)
Here, a genealogical idiom was used as a way of describing genetic changes at the cellular l e v e l T h i s description not only indexes a notion of gendered inheritance but also brings into view the social relations and values of nurturance that lie at the heart of the ‘identity’ of the Charity. As I examine in the next section, scientists were aware of the social dimensions of their research and drew upon this in talking about their work showing, as Fleck did in the 1930’s, that particular cultural ideas are used as ‘resources’ in scientific research (1937) or in this case its representation