Jurisprudencia de la Corte Nacional de Justicia

Sometimes clinical practice involved presenting the tools and tests of practice in a much more contingent light, in ways that were not necessarily linked to the triage of patients. In this section I examine how explanation, prediction and the

Although the fact that the population risk o f developing breast cancer increases with age was less frequently pointed out in these situations.

tools that secure the authority of these practices can be de-stabilised at the clinical interface, in a way that clinicians do not necessarily intend. Lock points out that a number of anthropologists (Evans-Pritchard 1937), (Wikan 1990) have shown that one of the characteristic features of a practice of ‘divination’ or prediction, is that ‘in seeking to avoid misfortune..new ambiguities and uncertainties’ are created (1998:7). I explore how this is also a feature of the evolving predictive medical practices of the Cancer Genetic Clinic in relation to three appointments that I observed. The first concerned the use of risk figures and the other two related to genetic testing.

The first of these clinical encounters took place between a clinician and a couple in their mid 50’s. Prior to the appointment the clinician, a consultant in Hospital X, had told me that the purpose of their visit was to give them the result of a predictive genetic test on the man’s blood.^^ Despite the presence of seemingly conclusive information and the clinician’s efforts to talk about the ‘certain’ interventions, that having a test result made possible, the discussion which ensued highlighted the contingency of risk information.

The consultant cuts straight to the chase at the start of the consultation, telling them almost immediately, turning to face the husband she says.

We have got your results back and they are not good, we found a mutation in your blood that is the same as your aunt who recently died of breast cancer.

The clinician then pulls out the lab test report and reads it to the couple before handing it to them. Their response is mixed, the man seems fairly relaxed and says ‘it was really what I expected’ whereas his partner appears more visibly

shaken, drawing in a sharp intake of breath and moving her chair closer to him. The man is concerned about ‘what it means for our children’. The doctor begins to

explain what their lifetime risk of developing breast cancer is if they have inherited their father’s mutated copy of the gene. She also talks about what their risks of other cancers could be if they have the mutation. This includes the risk of ovarian, melanoma and pancreatic cancers. This discussion is

accompanied by the provision of different risk figures for each cancer. She begins to suggest that they should be entered on screening programmes for these cancers when they reach an appropriate age.

The husband then interjects wanting to know what the ‘survival rates are for these cancers’. The consultant outlines in further detail a different set of figures to the above revealing sometimes quite large disparities between the figures she has given them already and information the man has asked for. In some of these the former is greater (i.e. melanoma) but in others it is the latter (i.e. ovarian). This An initial gene mutation search on the man’s sister had uncovered a mutation which meant that predictive testing for other members o f the family was possible.

leads into a more in-depth discussion between the couple about whether they should inform their children about the risk of melanoma. The man explains that, given these disparities, he is not so sure it’s necessary.^

Afterwards, at the end of a long and difficult appointment, where the demand for information from the doctor has been great, it is clear that she is not altogether happy about how the meeting has gone. When they have left the room she tells me that says she is worried by the husband’s reaction, particularly his questions about risk figures and reluctance to convey all the risk information to his children.

During an interview with this consultant a few days later she brought up the same appointment in our discussion, suggesting that it had been continuing to prey on her mind.

You know I’ve never felt that I’ve had a good rapport with them. I’ve always felt that despite the fact that they’re very educated I don’t feel that I express m yself well with them. I just always feel that I’m stuttering a bit and that I’m getting taken down a line o f explanation that isn’t working out quite right. The reason that we got into survival rates was because they had specifically asked for this at nearly every consultation and because they’d understood about the risk o f developing cancer. He had hit the nail on the head really that it doesn’t matter if you develop the cancer but what matters is whether you die o f the cancer. Seeing 85% o f women developing cancer is an awful thing but if only 20% o f them are dying o f cancer then it does put the risks into a different kind o f perspective and that was what he really wanted to find out. This is the kind o f complicated consultation I got into with them and they wanted that

We can see that this clinician’s sense of unease was directly connected to the ability of this patient and his wife, in seeking out more specific details, to force her to speak about the disparities and uncertainties relating to the use of risk figures in the Clinic

Another case brought about an equally qualified presentation of a different tool of clinical practice which, at least in the first half of this chapter, had appeared to be linked to an effort to make knowledge material and real. On this occasion I was sitting in with one of the nurse specialists in Hospital X when a couple arrived for their appointment. As I describe below it was a far from

straightforward appointment.

I had seen the couple, both I guessed in their late 30’s , earlier in the morning, noticing the fact that they had been sitting very closely together, talking with what seemed a quiet intensity. The nurse specialist was bright and upbeat on their arrival and there was a light-hearted discussion about where they had been ^ There is a more cursory discussion o f the risks that the man now faces following this test result. Dawn suggests that he should undergo prostate screening. It’s clear though that he is not keen, saying that screening could bring up lots o f ‘false negatives’

on holiday. But this shifted into discussing why they had made an appointment to come. The husband explains that, as the nurse knows, they had blood taken for testing several years ago, just after his wife had finished her course of treatment for breast cancer and as they have ‘ heard nothing’ from the Cancer Genetic Clinic (although they were being seen regularly in the Family History Clinic for routine check-ups) they decided to make an appointment at the Cancer Genetic Clinic to ‘find out what was happening’. The woman adds that she has recently ‘heard some things on the radio about how they’d found something else on the breast cancer genes and so thought we’d better find out’. The nurse, acknowledges how sorry she is that they’ve been waiting so long. She begins to outline some of the limits to current technology, using visual tools to explain why it can be difficult to find the particular mutation affecting a family.

Pointing to an iconographie representation of a piece of DNA, the nurse explains that:

W e’ve only looked at 50% o f the gene and w e’re looking for one little mistake. As you know a genetic test won’t pick up everything and it could be another gene, BRCA 3, 4, 5 and in some cases we never find the gene.

In this instance the difficulties of genetic testing forced the clinician to talk about genetic testing in a less than normally compromised way as she tried to square the legitimate demands and expectations of the couple with the very real limits of such a technology.

The validity of genetic testing was brought into question in a slightly different way during another appointment with a different couple; a husband and wife in their 50’s who had been to the Clinic to see the consultant on several occasions and who were coming for what was intended to be their final visit before making a difficult decision.

The woman is sitting with her husband in the Clinic. She had been diagnosed with breast cancer a few years ago and is now in remission, following chemotherapy and a mastectomy to remove one of her breasts. Before they come into the consulting room, the doctor tells me that they are here today to help them make a decision about whether or not to have a prophylactic mastectomy on the woman’s other healthy breast, given the woman’s family history.

They arrive clearly prepared with a folder full of cuttings and questions already planned. After responding to their queries, the consultant proceeds to talk about genetic testing. Although it hasn’t as yet been brought up by either of them, their response suggests that it’s clearly an issue that they have been discussing in

This was particularly difficult for this couple because o f the way it was bound up with other life changing decisions such as deciding whether to continue to try to have a baby or have the woman’s ovaries removed which would reduce her risk o f breast cancer.

some depth as the woman explains how it’s something she has decided not to undertake

Patient/1 think w e’ve decided not to go ahead with the test. I mean I can quite happily walk around thinking that I am probably positive for the gene but if somebody was to say oh yes 100% you are positive for the gene then I would find that difficult and also I’ve got to think of my daughter, she’s only 2 2 .1 don’t want to place too much burden on her and she’s got insurance to think about as well

There is slight pause before the patient asks the doctor in a rather worried way whether or not the hospital would only go ahead with surgery if she had a positive test. The consultant says no, they will still be willing to go ahead with it. This prompts the woman’s husband to raise further questions about testing and it’s utility in this context.

Patient’s husband/ I’m wondering about this then so if she tests positive for the gene then that doesn’t mean that she is necessarily going to get it and if she tests negative for the gene that doesn’t mean that she hasn’t got it as well, is that right?

Consultant/yes that is right

Patient’s husband/ well what is the point in that then (exasperated)

Consultant / well it would just be neater to have a genetic test because then if it was negative you really wouldn’t have to worry so much and might then not want to go ahead with the surgery’

Making things ‘neater’ did not, as expected, convince the couple at the end of the appointment to go ahead with genetic testing. In this situation, where a woman had had breast cancer and was not prepared to participate in a process of

attempting to obtain predictive knowledge for her or her daughter, there was very little else for the clinician to respond with. This left the doctor resorting to a description that served to compound the limits that the couple had already highlighted.

In all these examples, a narrative of uncertainty in relation to the tools and tests of the Clinic was forced by the questions, concerns and expectations of patients. This brought about a much more compromised presentation of the knowledge and technologies associated with BRCA genetics. In both the first and the last case we can see that these uncertainties were in fact used as tools for patients to shun the need to engage in particular predictive or precautionary practices.

3.3 Conclusion

This chapter has explored the routine practices of the Cancer Genetic Clinic and the way genetic knowledge about BRCA genes is communicated at the interface between patients and practitioners. Material objects, tools and tests have been

revealed as central to this work. Nonetheless, these are very much ‘mutable’ mobiles (Heath 1998) which do more than simply or always successfully securing the expertise of new genetic knowledge.

We can see that these objects can help to make explanations about inheritance, prediction or risk assessment meaningful to those attending the Clinic in an effort to demonstrate the authority and scope of new knowledge and technology. This strategy seems particularly important in enrolling those individuals for whom such knowledge might be relevant or ‘used’ now, or in the future. Nevertheless I have shown that objects and tools also bring a necessary discussion of ‘limits’ to the clinical encounter, when genetic knowledge and technology is considered not to be useful. These contradictory narratives must be understood in the context of the necessity to triage patients. This is a process that is particularly challenging for those working in this clinical speciality, given the heightened public profile of breast cancer where a particular discourse of awareness and visibility leads to increased patient expectation. However, ‘talking up’ and ‘talking down’ is not always a process which is containable. As the last examples of this chapter illustrate, one can seep into the other bringing a less than necessarily easy discussion of the contingency of knowledge and technology into view.

The presence of this contingency brings a new perspective to understanding the way the objects and tools of the Clinic help to make knowledge real. When an idiom of probability, risk or contingency subsume medical practice and when pinpointing genes or danger in the body of specific individuals is mostly elusive, iconic representations of DNA or the predictive graph might be particularly important. This gives foundation to Haraway’s claim that DNA is a ‘material, semi otic entity’(1992) as well as demonstrating the vital importance of sustaining this ‘fact’ in the face of the ongoing ‘invisibility’ of genetic knowledge in

clinical breast cancer genetics.

This chapter has shown how the communication of new genetic knowledge is both simultaneously enabled, but also deliberately and not so deliberately undermined by the tools and objects that constitute routine clinical practice. Such contradictory trajectories pose questions for those who would critique these

developments in terms of unilinear process of ‘geneticisation’. The evidence presented here suggests that it would be hard to locate all that is done as part of routine medical procedure in terms of this description. It is also clear that the expectations of patients have ramifications for the translation and communication of new genetic knowledge. The next chapter of this thesis examines another dimension of routine clinical practice which raises further questions rather than feeds in an easy or direct way a one dimensional understanding of transmission.