Prueba de la existencia del delito.

haven't seen them for years and I wouldn't even know where they live. On me mum's side, I don’t know. On her father's side I know nothing, she doesn't even know who her father was. All she knows is that it was a married man in the 1920's but that’s all. So there is no one else on her side o f the family alive apart from some distant cousins who don't even live in this country any more.

However, following Joan’s visit to the Clinic, it was clear that this somewhat fuzzy detail concerning her mother’s father had greater significance than she had thought. This was revealed in the first few moments of our second interview when I asked her to tell me about what had happened at the Clinic.

Joan/ well, everything is fine. I’ve only got a very low risk o f a hereditary gene. Although they picked up, my mum, as I explained to you I think, was illegitimate. Well her father was a Russian Jew. I don’t know anything about him only that he was Jewish and married and owned some warehouses up in London

Sahra/Oh right so how did this come up then?

Joan/ well, her Gran told her who he was and mum sort o f said over the years, w e’ve all got Jewish blood in us. All these sort o f jokes come out. Anyway I happened to mention to the nurse, she was asking if I knew anything on that side o f the family, and I said well I don’t know anything about that side o f the family apart from the fact that he was a Russian Jewish immigrant. She said ‘oh that’s quite interesting because that puts a slightly different slant on the hereditary [aspect]’. Apparently there is a slightly different gene that comes through on the Jewish side. So mum has agreed to have her DNA tested and she’s given permission to have her medical notes to be looked at, to see if there is any link that way. There may be something being passed on that side o f the family, so w e’ll wait and see.

In the course of our discussion Joan talked about how the medical interest in this aspect of her family history had impacted on her and her family and the range of issues it had raised

My mum thinks she knows the name [of her father] but she’s not even a 100 percent sure on the name. It’s not even on the birth certificate or anything. I think the general view of everybody is well we didn’t know him, so it doesn’t matter (laughing). All be it perhaps a little tiny bit o f him is in all o f us . Now that we know that perhaps there was something that he could have passed through it makes us feel that perhaps he’s a little bit more important. Years ago I was thinking about having AID, because we couldn’t have any more children. I would have jumped at it. But Eric said no, because w e’ve got one and he

didn’t feel all that comfortable with a child with father unknown type o f thing. It makes you think then well, if I had o f done, what sort o f genes would that child have had. So it’s quite a wide thing it could open up. Suddenly there is a grandfather that has got a lot o f importance in our lives, or could have a lot to do with things that happened to us. Everybody has said oh he was just someone who went with my grandmother, but he is a bit more important than just a fly by night if you like.

It was evident therefore that this ‘new thing’ had opened up many issues. I have already discussed how Joan’s fathers belief in predestination helped make tangible for Joan and others in the family the possibility of dangerous genetic inheritance in the family (see page 57). Although not explicit in what Joan had said, it is possible that the reappearance and sudden significance of this figure from the past may have provided renewed focus and force for such beliefs and given vent to further feelings of guilt or anxiety among different family members. There was evidence from our previous interview that a discourse of ‘guilt’ was present among family members as a result of another condition that both her husband and her son had. Some of this unease was conveyed in her final comments when I asked Joan whether she felt overall her appointment had been a good thing to do, given that regular screening had been set up for her and other investigations were underway with her mother.

Joan/Overall 1 would say that its settled a lot. The only thing is it’s thrown up the thing with the Jewish ancestry, that’s the only thing. I’m hoping that it won’t be years before we get an answer from that and that if it is something, a gene on that side o f the family, if it’s there then start dealing with that. It’s a new thing that’s come in and there are no answers to it.

If you have a look at this letter, [reaches for follow up letter sent to her from the Clinic after being seen there] 1 think it’s on the third page [reads from letter],

‘ there is a low chance o f finding a mutation in BRCA 1 or 2 ’ . But you see because o f the Jewish link, it worries me more, because it is more prevalent. [Reads from letter again] ‘ if we do find a fault in the blood sample and testing may make take many months or years and it would mean that anyone in the family who wished to know their genetic status could have a genetic test after counselling’ . But they don’t say what it would be, 1 presume it would just be a blood test. 1 do remember reading that there is something that affects the Jewish population , 1 think they get blisters. 1 seem to remember reading or hearing about some disease, it’s a bit like black people get sickle cell anaemia, that affects the black population or the African. So 1 wondered whether there is anything else, but 1 should imagine that it’s just the breast, because 1 went about the breast cancer . It’s just well hopefully we will get answers, because if we have to wait a year, you’ll be worrying. It’s the unknown, that’s the only doubt now.

87

This was illustrated in some o f what Joan said;

We've already got problems with my husband whose got hypercholesterolemia and the sons got it as well and the chances are that he’s passed it on. That causes its own problems and there is quite a sort o f guilt trip because they've passed it on . I think that’s what’s frightening is that you can pass something to those that you love.

The new significance given to a shadowy figure from her grandmother’s past had obviously reverberated through Joan’s family. Although this might have given renewed vent to older issues , her comments also suggested that it had also raised new and other troubling questions.

The three case studies outlined here show how patients not only had to be pro­ active in getting to the Clinic but also in involving others. For someone like Margaret who did not fit this ‘active’ model, we can see that the inclusiveness of being a patient for herself and others was something less expected. But even for someone like Emily, who saw her active participation in terms of being a ‘good’ aware patient, fulfilling this notion of patienthood was thwarted by the reluctance of her mother to participate in her daughter’s preventative goals. The work the pastoral practices of the Clinic precipitated and required of such individuals and their related kin was not always necessarily perceived in terms of ‘care’ by all. Although I did not have the opportunity to talk to related others, from what was said by these individuals, it was clear that this could engender or exacerbate tension among family members. The case studies presented here show how unknowing, reluctant, or in Joan’s case, essentially unknown relatives, became entangled in each others medical care in ways that resituated risk, rights and responsibilities between related individuals.

4.3 Conclusion

A notion of ‘selves in relation’ has been used by others to describe how those attending Genetic Clinics perceive their actions in terms of responsibility to others or how predictive practices entail shared involvement(Hallowell 1999), (Kenen 1994) and(Armstrong et al 1998). My research supports such findings but suggests that this articulation of patienthood arises at the intersection

between the expectations of patients (for themselves and others) and the pastoral practices of the Clinic. That is ‘care for the family’ (and ‘care for the future’)in making ‘ethics’ explicit and helping to ensure the utility and viability of genetic knowledge, have material consequences for patients.

In this context, a notion of ‘fractal’ patienthood or the ‘dividual’ does shed new light on what being a patient in a Cancer Genetic Clinic means. I am not

suggesting that this is a necessarily fixed or widespread property of identity in ‘western’ arenas . In fact it may be at odds with a more ‘ego’ centred form of personhood (McFarlane 1978) or even the reflexive project of the self (Giddens

1981), (Rose 1996). That is awareness of one’s own health in getting to the Clinic might conflict with a much more distributed notion of patient identity required as a result of such a visit, as some of the case studies in this chapter suggest. Others might interpret this aspect of being a patient as simply another expression of individuality; that is the centredness of the person in a nexus of social relations (Edwards 2000:37). However we have also seen that the person in the Clinic is not necessarily always at the centre of such a network and may actually not be considered the ‘patient’ or the most important ‘patient’ by clinicians. Nonetheless Hallowell points out the notion of a ‘relational self, considered to be a property of female ‘nurturant’ identity (1999)(see also Gilligan 1982), could be particularly enabling in the context of predictive genetics. 1 have suggested that it is also something which the practices of the Clinic rely on and, to a certain extent, reinforce.

Just as attention to exchange relations in anthropological work on personhood has helped to illuminate a seemingly radically different understanding identity in non-western contexts, so attending to the dynamics of exchange in the Clinic also draws attention to a very different dimension of patienthood. An idiom of ‘gift’ exchange is evident in the way clinicians talk about the necessary involvement of multiple related kin as ‘care for the family’ or ‘care for the future’ and the way some of those attending the Clinic perceive of their actions as caring for others. Although this is a gift exchange that not all attending the Clinic are necessarily willing to extend or which related others want to participate in. The ‘dream’ of relations and relating being somehow a ‘good thing’, although a powerful idiom in the context of talking about ‘the family’(Yanagisako and Delaney 1995) is, as Strathem points out, just that; ‘everyday kinship practices are as much about dividing and excluding as they are about connecting’( 1996: 530).

The concern with the ‘social’ demonstrated in the pastoral practices of the Clinic poses a challenge to those who would critique developments in the new genetics as a necessarily leading to a form of ‘médicalisation’. Describing the nature of this authority, Finkler, in her study of the ‘experiences’ of women attending Breast Cancer Genetic Clinics, writes that;

DNA is devoid of morality or affect, the hallmark of family and kinship relations..[it] does not impose, express, or insist on responsibilities, obligations or love, other than requiring living relatives to furnish blood samples in order to establish genetic markers on chromosomes’ (2000: 187).

My analysis suggests quite the opposite. I show how the transmission of

knowledge and care in breast cancer genetics is embedded and predicated on ‘the combinatory power of substance and code [..]at the heart of a notion of blood relative’ (Carsten 2001:50). Nevertheless this is a morality of connection, obligation and responsibility which is not always or necessarily shared among related kin. The next chapter examines how the ‘bi-directional affective

entanglements’ (Rose 2001) that arise from predictive health care practices have consequences, not just for kin relations, but also for those who work in these clinical arenas.

Chapter 5

Working with BRCA genes; the ambivalence of