Managing self-responsibility through other-oriented blame: Family accounts of genetic testing

Social Science & Medicine 66 (2008) 1521e1532 www.elsevier.com/locate/socscimed

Managing self-responsibility through other-oriented blame: Family accounts of genetic testing* Michael Arribas-Ayllon*, Srikant Sarangi, Angus Clarke Cardiff University, Cardiff, South Glamorgan, United Kingdom Available online 28 January 2008

Abstract ‘Genetic responsibility’ has emerged as a key notion for understanding how genetic risk reshapes patterns of choice, identification and obligation within families. Where previous research has examined the difficulties of managing responsibility for genetic testing and disclosure of the testing process and results, there is little work that examines these themes when accounts of genetic responsibility involve blame. In this paper, we explore how forms of responsible selfhood are managed through accounts of otheroriented blame in the family sphere. Interviews (n ¼ 20) were conducted in the United Kingdom with parents whose genetic condition may have consequences for other family members. Using rhetorical discourse analysis we show that a key discursive resource for managing blame and responsibility is the use of contrast e via constructed dialogue, character/event work and extreme case formulation e to either endorse or contest versions of responsible/moral selfhood. We conclude that claims of personal responsibility manifest in open disclosure of genetic information often entail the blaming of others within the family. By extension, blaming others has moral and relational significance when competing views of genetic responsibility are at stake and when genetic understandings are incongruent. Crown Copyright Ó 2008 Published by Elsevier Ltd. All rights reserved. Keywords: UK; Genetic testing; Genetic risk; Accounts; Blame; Responsibility; Rhetorical discourse analysis; Self-other; Misalignment

Introduction Issues of familial responsibility in the management of health and illness are commonplace. In the genetic context, these issues are multiplied by the very nature of hereditable risk. The increasing availability of

* This research was funded by the ESRC (RES-145-28-1003) awarded to A. Clarke and S. Sarangi. * Corresponding author. School of Social Sciences, Cardiff University, No. 6 Museum Place, CF10 3BG, United Kingdom. Tel.: þ44 2920875846. E-mail addresses: [email protected] (M. Arribas-Ayllon), [email protected] (S. Sarangi), [email protected] (A. Clarke).

genetic testing and genetic counselling has led to a corresponding increase in the awareness of the genetic constitution of risk and disease. There are three particularly useful accounts that describe the impact of genetic knowledge on social life: (1) geneticization, (2) genetic responsibility, and (3) genetic networks. Geneticization (Lippman, 1991) attests the individualizing effects of narratives that reduce health and disease to genetic factors. Novas and Rose (2000) observe that genetic constructions of risk and the emergence of new and more accurate diagnostic technologies generate new forms of ‘genetic responsibility’. Moreover, families and citizens are now refigured in a ‘genetic network’ (Armstrong et al., 1998) or through forms of ‘biosociality’

0277-9536/$ - see front matter Crown Copyright Ó 2008 Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2007.12.022

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(Rabinow, 1996; Taussig et al., 2003) that generate new ethical obligations about identity, reproductive choice, interpersonal disclosure, and the testing of kin. In this paper, we wish to examine the ways in which genetic responsibility is managed when families are engaged in accounts of blame. Central to our enterprise is how accounts of blame are oriented to the presentation and management of the responsible self. We consider how families frame decisions to (not) test or (not) disclose when genetic knowledge can potentially alter and expose the (mis)alignment of family relations. We proceed as follows: first, we locate the potential for exploring genetic responsibility in the context of family relations. We then review some discursive resources used by speakers to accomplish responsibility as situated accounts. This is followed by a discussion of our data corpus, the analytic framework and analysis of key data extracts. Finally, we discuss how the allocation and mitigation of blame are complex strategies for the mediation of competing understandings and responsibilities of genetic risk. Genetic responsibility in the family context A characteristic of the ‘new genetics’ is that responsibility for the management/prevention of risk is not simply an individual realisation, but a familial obligation (Kenen, 1994; Lupton, 1995; Petersen, 1998). Furthermore, a genetic diagnosis in the family might generate responsibility through self-blame and guilt. Many studies report feelings of guilt and self-blame among parents whose children are affected or tested positive for a genetic condition (Chapple et al., 1995), while other studies describe the phenomenon of ‘survivor guilt’ expressed by kin who have escaped a positive mutation (Murakami et al., 2001; Tibben et al., 1992). Though accounts of self-blame and guilt are significant in their own right, our specific interest is to understand how other family relations are accounted for in terms of genetic responsibility. We can identify three aspects of blameeresponsibility in the genetic context of the family: gendered responsibility, reproductive choice and genetic testing of children. Despite its radical implications, responsibility within the ‘new genetics’ is still reliant on old structures of kinship. For instance, in Western society responsibility for family health and the maintenance of family ties falls disproportionately on women (d’AgincourtCanning, 2001). Women are traditionally viewed as ‘gatekeepers’ and ‘transmitters’ of family information (Richards, 1996). Adelswa¨rd and Sachs (2003) describe the disclosing of bad news to family members as the

‘messenger dilemma’, while Hallowell et al. (2003) attest the burden of disclosing genetic information that may be at odds with relatives’ rights ‘not to know’. Themes of responsibility are also evident among men’s accounts of genetic testing. Hallowell et al. (2006) show how male carriers and non-carriers of BRCA1/2 engage in different forms of narrative reconstruction vis-a`-vis identity and family. While carriers accepted biological responsibility for the part they played in potentially passing on a mutation to their children, they invoked fatalistic explanations to exonerate themselves from moral responsibility. Non-carriers also sometimes express guilt at not sharing their families’ risk of disease, thereby demonstrating responsibility through compassion. Responsibility and blame are key concerns in the context of reproductive choice. Downing (2005) illustrates the complexity of reproductive decision-making in families facing Huntington’s disease (HD). Responsibility for accepting, modifying or avoiding genetic risk is an emergent and jointly negotiated process. Accounts of family blaming reveal strategies for presenting the self as responsible and praiseworthy, either by contrasting the self with those who are irresponsible or by foregrounding aspects of responsible conduct. Konrad’s (2007) recent ethnography of families at risk of Huntington’s disease illustrates the complex forms of moral navigation around (non)disclosure found within families. Local negotiations of (not) telling the truth to offspring and children convey the partial, muddled and creative dimensions of individual families’ attempts at balancing responsibility and deflecting blame e a point which we shall return to in our Data analysis section. In relation to genetic testing of children, families face the difficult task of balancing the child’s autonomy with parental responsibility. Moral presentations of family responsibility may seek to counter implicit blamings about whether family decisions actually or potentially recognise the autonomy of the child (Arribas-Ayllon, Sarangi, & Clarke, in press). Moreover, intra-family blaming may occur if parents decide not to disclose genetic information on the grounds that it may ‘spoil the happiness’ of their children (Forrest et al., 2003). For instance, among families affected by Huntington’s disease (HD), adult offspring blame affected parents for concealing information about their condition (Skirton, 1998). The emerging literature on genetic risk and the family confirms that open, dialogic communication is, in many ways, the default responsibility. Family ‘alignment’ is the ethico-moral ideal of effective communication when genetic risk is unproblematically disclosed

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and discussed between family members. But what are the implications for genetic responsibility when family communication is characterised by ‘misalignment’? Here, we employ the analytic category of misalignment as the construction of accounts whereby family communication of genetic risk is problematic and contested. Accounts and attributions of blameeresponsibility For the purposes of this paper, we distinguish psychological versions of blame as internal states of the person (e.g. self-blame and guilt) from a discursive view of the action-orientation of talk as occasioned social practice (Antaki, 1988). Rather than debating the ontological versions of blameeresponsibility, we focus on family accounting practices to show how self-responsibility is rhetorically constructed through other-oriented blame. ‘Accounts’ are culturally embedded forms of mundane talk and are routinely expected whenever conduct falls outside the domain of normative expectations. Drawing on Austin’s (1961) formulation, Scott and Lyman (1968) distinguish between two types of accounts: excuses and justifications. Excuses are accounts where responsibility is mitigated for an action deemed ‘bad, wrong or inappropriate’ (1968:47). Justifications are accounts where responsibility for an action is accepted, but its pejorative association is denied. Both excuses and justifications are ‘techniques of neutralization’ (Sykes & Matza, 1957) calling for impunity despite one’s unanticipated or untoward conduct. Accounts can also be formulated through the reporting of problematic events from which responsibility is attributed or inferred (Morris, White, & Iltis, 1994). Attribution of responsibility is often occasioned by reporting an ‘unhappy incident’ which forms the basis for subsequent actions/accounts (Pomerantz, 1978). In the everyday context, the temporal orderings of events and actions allow speakers to allocate responsibility via the ‘antecedent actions’ of the blameworthy target, while resisting any undercutting or challenging of the speaker’s claim. Countering blame often entails recasting the status of the speaker as somehow responsible for the ‘unhappy incident’, or by ascribing knowledge that can index motive and intention (Watson, 1978). Family accounts of (genetic) responsibility routinely locate an ‘other’ against whom blame is labelled. ‘So I told Paul but he was in denial’ is a clear example of other-oriented blame, but, in the context of disclosure, it also presupposes self-responsibility. Such formulations are realised by contrasting ‘the self’ with ‘the

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other’, often modulated to signal implicit and/or explicit accounts of blameeresponsibility. For example, ‘I hate my father after everything I’ve done for him’ is both an implicit framing of self-responsibility and an explicit framing of other-oriented blame. Other framings distinguish between ‘character work’ and ‘event work’ (Hall et al., 1999) whereby speakers invoke internal/external categories to intensify or mitigate blameworthy persons. For example, blameworthiness is more explicitly formulated in ‘my mother is a very selfish person’ compared with ‘my mother doesn’t understand she’s old fashioned’. Against this analytic backdrop, in the next section, we discuss our methodology and coding scheme to identify the specific discourse devices used to frame accounts of blamee responsibility in the context of family accounts of genetic testing. Methodology Participants were recruited through the All Wales Medical Genetics Service, based in Cardiff, to which they had been referred for genetic counselling. Only those adults were recruited whose genetic condition could have consequences for children and other family members. While accommodating practical concerns of access and consent, open-ended sampling was used so as not to restrict the kind of families or conditions represented in the study. Our rationale was to incorporate as much variability as possible to understand what kinds of accounting practices emerged across a range of genetic conditions. Families were contacted via their clinical genetic consultant and were invited to be interviewed in their homes about matters relating to family histories of genetic disease, events surrounding clinical diagnosis, family processes of decision-making and risk management. In total, 20 semi-structured interviews were conducted. A broad thematic analysis was performed on the transcripts through close reading and note-taking. Accounts of blameeresponsibility were identified via keywords or associated expressions, which fall into two broad categories: ‘other-oriented blame’ and ‘self-responsibility’. We realise that blameeresponsibility may be interpreted widely to include internal states of the person (self-blame) or ethico-moral attributions to other persons (other-oriented responsibility). However, we found that managing self-responsibility through other-oriented blame was a robust pattern of accounting within the sphere of genetic responsibility. Fig. 1 represents an indicative summary of our coding of self-responsibility and other-oriented blame in our

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M. Arribas-Ayllon et al. / Social Science & Medicine 66 (2008) 1521e1532 Other-oriented blame (1) So I told Paul but he was in denial (2) they [parents] don’t wanna know. And that’syeah, the old fashioned way they are. (3) she’s [sister’s] the sort of person who is ignorant of things […] I wouldn’t say she doesn’t care but (4) I think my sister in [place] ((chuckles)) it went in one ear and out the other

Self-responsibility (11) as for me I can accept Penelope’s – Penelope’s is different, you know I can accept hers but Michael can’t (12) I’ve told them [siblings] all [about my carrier status] (13) he [ex-husband] didn’t sort of believe everything I was telling him and I wanted him to hear it from the horse’s mouth (14) we’ve tried to be honest you know

(5) he [brother] doesn’t wanna go back for any more tests and what is to be is to be in his eyes (6) certainly my sister (.) the eldest who has lost her son she (.) didn’t want to really talk about the condition

(15) I go to talk to people about it and they change the subject they’re not (.) not interested so I just don’t bother (16) well I said to him [brother] you’ve got to do it for his little boy’s sake

(7) he won’t- he’ll [partner] talk about it but from a distance

(17) so I’ m quite open with him and I can say to Cale I hope you’re using precautions

(8) so I’ve mentioned it once or twice but they just er my mum just changes the subject

(18) so I just don’t want to spoil that happy memory that he’s [father] got

(9) I think it’s her [mother] way of her trying to put my father in an early grave

(19) well I mean I’ve tried talking to my nan I mean when I found about the results it broke my heart

(10) she [mother] hasn’t even bothered having the test

(20) I just think it’s best to let sleeping dogs lie that’s the way I see it

Fig. 1. Coding of blameeresponsibility vis-a`-vis self/other dimensions.

sub-corpus which is not numerically representative, but it illustrates the range and variation of accounts. It should be noted that there is a degree of inevitable overlap between accounts of other-oriented blame and self-responsibility e see statements (1), (8), (11), (13), and (15). Along the dimension of other-oriented blame, parents, siblings, partners and cousins are routinely blamed for ‘not talking’, ‘not knowing’, ‘not accepting’ or for moral-dispositional qualities imputed from such behaviours. Along the self-responsibility dimension, responsibility is claimed through acts of disclosure (‘I told’, ‘I said’, ‘I tried to mention it’), nondisclosure (‘I just think it’s best to let sleeping dogs lie’), and acknowledgement (‘I can accept’). However, self-responsibility is also signalled in subtle and mitigating ways via accounts of self-management (‘I picked myself up’) and appeal to family loyalties (‘I mean she had her wicked ways about her but she was still my grandmother’, ‘I’ve looked after him for eighteen years’). What Fig. 1 fails to show, however, is the way different family members and generations are exonerated in accounts of disclosure; we elaborate this later.

We next select illustrative examples for an in-depth analysis of the above patterns and highlight the rhetorical resources used to construct sensible accounts of blameeresponsibility. Data analysis In our analysis, we focus on how participants utilise the following rhetorical devices: constructed dialogue, extreme case formulations, character/event work and contrast (cf. Arribas-Ayllon, Sarangi, & Clarke, in press). Constructed dialogue, or ‘reported speech’, is one evidential device widely used in accounts to recruit voices and authenticate different versions of events. ‘Extreme case formulations’ (Pomerantz, 1986) are absolute expressions used to enhance the legitimacy of complaints, accusations, justifications, etc. Character/event work is a way of categorising, albeit selectively, objects and sources of accountability, including blameeresponsibility. Contrast structures (Smith, 1978) are employed to establish different versions of events and provide a powerful analytic resource for

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explaining and contesting different states-of-affairs (Sarangi & Clarke, 2002). In the following extracts, accounts of (non)disclosure or decisions to (not) test are specified in terms of ‘who’ forms the object of blame, which, in the case of genetic risk, is oriented to different family members. The remainder of the paper will consider aspects in which the object of blame becomes the basis of contrasting the self/other dimension, with particular focus on ‘how’ discursive/rhetorical resources are employed to manage self-responsibility through otheroriented blame. In all the transcripts that follow, FP ¼ female partner, MP ¼ male partner, M ¼ mother, R ¼ researcher. The following transcription conventions were used: hyphen indicates cut-off words; (.) signals untimed micro-pause; (^^^) stands for inaudible expression; texts in square brackets represent a gloss. In our first example, M (32 years) is an affected woman with an inherited tumour whose 5-year-old son (Richard) recently tested negative for carrier status. Explicit blaming occurs when the researcher orients the discussion to notions of stigma (‘being a genetic freak’). M gives an account of her reaction to the positive result, which exposes an unwelcome (hereditary) association with ‘my father’. Our analysis will focus on how selfresponsibility is managed through explicit character work. Data Extract 1 1. R: when you think about it when you said about being a genetic freak 2. M: yeah 3. R: is that something that you talk to other people about do you talk about your sort of genetic status to people or 4. M: well I mean I’ve tried talking to my nan I mean when I found about the results it broke my heart (^^) it was a shock 5. R: so what age were you when you were tested again 6. M: (.) it was about (^^^^) 7. R: Right 8. M: so I mean I was hoping it was going to come back that it wouldn’t but it came back that I have got this gene (^^) this gene (.) my attitude towards my father is I can’t stand him 9. R: oh because 10. M: he’s hateful he’s spiteful I’ve seen the way he’s abused himself and now we’ve got this gene we share this thing and if (^^^^) I don’t want to share something with him (.) it’s bad enough that I’ve (^^^^) it’s bad enough I’m diabetic like he is but to know that he’s given me this genetic gene and I could have passed it on to my child I hate him (.) I hate him with a passion and he knows that 11. R: and did you (.) this sort of hatred was that there before 12. M: yeah 13. R: yeah 14. M: I’ve got no respect whatsoever for my dad

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15. R: yeah 16. M: none at all (.) he’s (.) disrespectful to everything so I mean I’ve got no respect because of my dad I’ve looked after him for eighteen years and he just keeps abusing himself and in the end I thought well what am I doing it for I’m not well and I’ve got a family myself and I thought what am I doing this for so I just let him go (.) I just can’t be bothered and when I told him about it it’s a case of well we’re all (^^) and I said well what about Richard (.) oh yeah (^^^) and I just thought (.) well he’s a muppet (.) he is a muppet ((laughter))

Explicit blaming occurs without provocation in turn 8 as M recounts the ‘shock’ of receiving a positive test result. This ‘unhappy incident’ (‘I have got this gene’) alludes to the biological association with ‘my father’ who is summarily denounced (turn 8), followed by a justification (turn 10) when prompted by R. M performs character work by drawing upon existential/internal attributions (‘he’s hateful and spiteful’) and through evidential reporting of wrongdoing (‘I’ve seen the way he’s abused himself’). Blame work appears to be negating a presumed (genetic) resemblance between father and daughter by intensifying the contrastive dimension of the father’s character. The blameworthiness of the father is developed more strongly when M attributes biological culpability (‘he’s given me this genetic gene’, turn 10), which could have hereditary consequences for her child, Richard. The innocence of the child is contrasted with the agency of the father, although there is ambiguity surrounding the father’s presumed culpability and self-abuse. In turn 11, the researcher hints at a possible misalignment prior to the ‘unhappy incident’. M, in turn 16, draws attention to the extreme frequency of blameworthy conduct (‘he just keeps abusing himself’), which she contrasts with her own self-responsibility (‘I’ve looked after him for eighteen years’). For M, this counts as justification for blaming. In the face of persistent self-abuse, her caring responsibilities are exonerated. The skilful attribution to external factors (‘I’m not well and I’ve got a family myself’) provides further justification, in which case M cannot be blamed for deserting her father. In the same turn (16), M recounts the scene concerning disclosure of her genetic status to her father. Although incomplete, we can assume the pronominal and universal category ‘well, we’re all’ suggests the father’s fatalistic reaction to the news. The father’s alleged fatalism is thus contrasted with M’s reproductive view of genetic responsibility. M’s remark e ‘what about Richard’ e further contextualises this dialogue, which is followed by the father’s ‘oh well’, implying that minors ought to be exempt from fatalism. We see

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here how building the father’s character as despicable provides justification for explicit blaming, but it also illustrates an important tension between two competing views of genetic responsibility. The self-abusive and fatalistic father whose reproductive years are finished is contrasted with the (active) reproductive responsibility of the mother/daughter. This contrast is dramatised and replayed as a demonstration of the responsible self-work which has both moral and generational significance. In Data Extract 2, we return to a later point in the same interview. So far, it has been established that the genetic consultant wanted to test M’s Uncle (father’s brother) for the hereditable disorder, which M advised against, as it would expose her father’s questionable paternity (‘my dad was a bit of a mix’). She believes the test results would expose the grandmother’s presumed infidelity to the family and would ‘destroy both my dad and his little [brother]’. In the sequence below, M responds to the researcher’s probe as to whether she desires to know her ‘genetic history’.

Data Extract 2 1. M: No because I just feel if I did (^^) gone into looking (^) it’s just going to hurt (^^^^^^) which is why I’m quite happy (^^^) because I’ve got three cousins (.) my uncle’s got three (children) and it could upset them as well knowing that (.) I mean they idolise their grandmother and I just don’t want those memories ruined for them as well so I just think it’s best to let sleeping dogs lie that’s the way I see it but no my mother would love it she really wants it (^^) and I’ve said no (.) no 2. R: And what’s in it for your mum then do you reckon or has she said 3. M: Just sort of bitch off at my grandmother who’s dead because they didn’t get on so I just think it would be an opportunity for her to turn around and say see I told you so (.) that’s all it is a revenge type of thing (.) so it’s like I said no chance

Our interest here is how M offers a justification for not disclosing genetic risk to other family members. The explanation ‘it’s just going to hurt’ presupposes that such enquiries would expose doubts about her father’s paternity, affecting not only her uncle but also his children’s relationship with their grandmother. Non-disclosure is justified because it would prevent further misalignment in family relations. She develops this account by recruiting the ‘three cousins’ as figures of potential misalignment. If a ‘genetic history’ revealed its secrets ‘it could upset them’ or damage the ‘memories’ of their deceased grandmother. Having established the grounds for avoiding misalignment, M restates her justification with the

proverbial metaphor ‘it’s best to let sleeping dogs lie’ (turn 1). Two aspects of this statement warrant attention. Firstly, the proverbial meaning carries with it the received wisdom that one should not exacerbate old problems. Secondly, its formulation as an extreme case (‘best’) asserts the maximum proportion of what is right or just. The reader/listener is invited to hear this as a persuasive justification that no possible good could come from exposing the family’s genetic history. Such circumstances legitimate the unorthodox view that prevention of testing/disclosure is actually consistent with genetic responsibility. This is offset by the blameworthy figure of ‘my mother’ whose motive to endorse a genetic history foregrounds the unorthodox view. M counters this viewpoint with an emphatic rejection of the mother’s request for genetic testing (‘and I’ve said no’). In response to R’s probe regarding motive and intentionality, M recruits the hypothetical voice of the mother (‘see I told you so’) and establishes motive (‘a revenge type thing’) to cast the qualities of a character whose motivations are entirely personal and vindictive. This unorthodox view of genetic responsibility is sustained when testing is thought likely to expose the ‘truth’ of paternity and therefore uncover family secrets. Blameeresponsibility is dramatised by contrasting the personal and the familial, and by illustrating that ‘appeal to family loyalties’ is sufficient justification for avoiding circumstances where genetic testing may lead to blaming. Against such explicit accounts of blameeresponsibility, we now examine rather subtle, but contrasting, styles of family communication. In Data Extract 3, there are four people present in the interview: the mother (FP, 51 years), the partner (MP, 55 years), the teenage son (Gary, 16 years) and the researcher. FP was identified as a carrier for a serious recessive disorder. The son was tested in his teenage years and produced a negative result. Prior to this, the condition was diagnosed in FP’s eldest sister’s (Mary’s) son (George) who died at the age of 28. Blaming occurs as FP discusses differences in disclosure trajectories between herself and her older sisters.

Data Extract 3 1. FP: certainly my sister (.) the eldest who has lost her son she (.) didn’t want to really talk about the condition 2. MP: well there’s no point in her being tested because she was obviously the carrier 3. FP: no but she didn’t (.) it wasn’t (.) I don’t think she’s had the open discussion with her son that we had with Gary because we’ve already put more in ourselves (she’s) much more private but we’re a bit ((slight laughter)) aren’t’ we

M. Arribas-Ayllon et al. / Social Science & Medicine 66 (2008) 1521e1532 4. MP: yes I think (.) Mary could also take it one of two ways (.) one is like just to leave it (^^^^) it won’t be there and carry on if it’s going to happen it will happen if it won’t it won’t (.) you know she can have that attitude as well can’t she 5. FP: yeah yeah 6. MP: and the thing is by the time you were tested George was in his late teens early twenties (^^^^^) about six years ago he was 7. FP: and it has no influence on (.) I told Mary I was going to have the test but that didn’t have any knock-on effect for George and I told my other sister and she had tests but me doing it really didn’t encourage them at all 8. MP: no and I think also you and Sandy have (^^^) go get it done 9. FP: yeah yeah 10. R: she’s not interested in 11. MP: way too cool 12. FP: doesn’t want to know 13. MP: don’t worry about it (.) I mean it may be the same thing again (^^^) she’s not (^^^) 14. FP: yes but we were of the attitude that you know Gary is maturing and (.) looking at young marriages and you know the joke of the family is that well if you’re carrying it you might have to wear two condoms instead of one ((laughter)) and we tried to sort of put it like that (.) you know that it’s not the end of the world if you are carrying it you’re just going to have to be very careful and make sure that your (.) future partner knows everything about it you know (.)

Our focus here is how the elder sister’s (Mary’s) indifference is jointly accomplished by FP and MP. FP explains how her eldest sister was not inclined to discuss risk with her affected son. Blame is mitigated by MP since ‘she was obviously the carrier’, in which case disclosure was irrelevant. In turn 3, FP builds a contrast between family styles of communication, indicating that Mary was not ‘open’ with her son, while they themselves had ‘put more’ into being an open family. Here, character work facilitates a contrast between her ‘private’ sister ‘who didn’t want to really talk about the condition’ and her own open, dialogical family. MP joins in to endorse the fatalistic character of the sister while implying they (note how he searches for confirmation at the end of turn 4) have no such ‘attitude’. The fatalism of the older sister is framed as a dispreferred view of genetic responsibility (i.e. responsibility is delayed or unconventional), in which genetic risk is not discussed even though other family members may be at risk. MP now steers the discussion to when FP was initially tested for carrier status (turn 6). FP explains how testing had little impact on the other two sisters. For instance, Sandy ‘didn’t pursue it with her girls’

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and ‘treated it in a different way’, which indexes the sister’s presumed disinterest in disclosure. Both MP and FP appeal to character work: while MP invokes dispositional qualities (‘way too cool’), FP encodes intentionality (‘doesn’t want to know’). This characterorientation to developing the sister’s indifference is similar to that of fatalism (i.e. both result in absence of familial communication), although it signals deferral of genetic responsibility, as opposed to not acting because one’s genetic fate is predetermined. FP’s contrastive account of ‘attitude’ and ‘family’ is evidently dialogical and responsible, suggesting that family members can regain a sense of agency through acts of disclosure (turn 14). The allusion to ‘wearing two condoms’ signals responsibility by demonstrating how family jokes are effective in negating fatalistic attitudes (‘it’s not the end of the world if you are carrying it’). Rather than fatalism, family discussion of genetic risk is shown to have the benefits of transmitting responsibility to the son who will, in turn, responsibly disclose his carrier status to ‘future partners’. In addition to contrasting views of genetic responsibility, blame work is also oriented to characters (parents, siblings and cousins) whose understanding of genetics is posed as an obstacle to risk communication (especially after disclosure has occurred). In Data Extract 4, we have a couple (FP, 36 years; MP, 34 years) whose 1-year-old child has been diagnosed as a carrier of Cystic Fibrosis (CF). FP was identified prenatally as a carrier of the disorder; she briefly describes her reaction to diagnosis and her attempt to disclose carrier status to her parents. In particular, we examine how an account of ‘not blaming’ is jointly managed.

Data Extract 4 1. FP: It’s just a funny thing to think I’ve gone thirty six years (.) having been a carrier but I can’t speak to my parents about it I’ve tried to mention it but it’s like ignorance is bliss they just I wouldn’t even st2. MP: Well they don’t understand they don’t 3. FP: They don’t understand 4. MP: You know we don’t understand that much but 5. R: Hmmm 6. MP: We’ve been told by 7. FP: And we’ve ((several people talking)) 8. MP: Other people as well 9. R: Yeah 10. FP: Because my mother doesn’t fully understand amniocentesis or anything 11. MP: Yeah 12. FP: I mean she’s had four of us and she had a rough time with all of us but (.) but there was none- none of this going on at her (.) time of life

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13. R: Yeah I know 14. FP: Really (.) so I’ve mentioned it once or twice but they just my mum just changes the subject 15. R: Right so it’s not 16. FP: No 17. R: Doesn’t want to know or isn’t 18. FP: No I don’t think so so some- my mum and dad- well 19. MP: It’s something they don’t understand 20. FP: Yeah 21. MP: They don’t wanna know 22. R: Yeah 23. MP: You know it’s just a 24. FP: And that’s- yeah 25. MP: The old fashioned way they are 26. FP: And it’s not affecting anybody 27. MP: Yeah 28. FP: As far as they’re concerned so

FP describes the phenomenon of having an old identity revealed as a genetic identity via medical disclosure (cf. Armstrong et al., 1998), the hereditary basis of which is attributed to ‘my parents’. The formulation ‘I can’t speak to my parents about it’ signals misalignment between her parents and the new identity. Also ‘I’ve tried to mention it’ foregrounds self-responsibility, in which case the problem lies with the parents. The proverbial ‘it’s like ignorance is bliss’ performs at least two important rhetorical functions: the suggestion of ‘ignorance’ is constitutive of character while at the same time justifying FP’s inability to disclose. The potential blameworthiness of the parents is mitigated by their lack of ‘understanding’. Both FP and MP jointly construct this as an excuse in turns 2 and 3. MP even admits their own lack of understanding, thus suggesting that it might be unfair to blame the parents. In turn 12, MP provides additional resources for excusing her mother: the reference to ‘rough time’ and the expression ‘but none e none of this was going on at her time of life’ invoke exonerating historical circumstances. In turn 14, FP returns to the theme of misaligned disclosure, this time imputing intentionality to the mother: ‘my mum just changes the subject’. The researcher, perhaps sensing this shift, orients to the mother’s ‘intentionality’ rather than ‘ignorance’. This results in a situation where blaming is sustained and mitigated in turns 19 and 21. While MP imputes intentionality and agency to both parents (‘They don’t wanna know’), reference to the ‘old fashioned way they are’ (turn 25) subtly mitigates responsibility. In what follows, a position of not understanding or not wanting to understand is sustained as an excuse since, from the perspective of the parents, carrier status is literally

interpreted as a condition whereby no one is actually affected. But the potential risk, though something worthy of disclosing, remains unaccounted for and misaligned. In our analysis so far, blame work underpins a scenario where disclosure of carrier status fails to result in open communication. Self-responsibility is claimed for disclosure, but other-oriented blame is withheld on the pretext that non-understanding of genetics counts as a legitimate excuse for not blaming the parents. This ‘not blaming’ of the parents produces a complex position where blameeresponsibility is both mitigated and sustained. While blaming or not blaming parents is a subtle and elaborate exercise, blaming siblings involves noticeably less duty to exonerate. In the interaction below, which is an extension of Data Extract 4, FP is discussing issues of disclosure/testing in relation to her siblings.

Data Extract 5 1. R: So well none of your- your sisters or brother have test, have had a test2. FP: No. 3. R: To see if they’re carrier status 4. FP: No no. 5. R: Is it something that you6. FP: I’ve told them all 7. MP: Hmm but- yeah (.) you8. FP: I think my eldest sister (.) only because you know she’s she’s more she’s got a PhD in biology so she ((chuckles)) thinks along (.) she’s the only one that’s taken sort of a bit of interest in what I said to her 9. R: Hmm. 10. FP: By the way I’m a carrier (.) she said ahh, you know and I think they would (.) 11. MP: Hmm yeah 12. FP: I think my sister in [place] ((chuckles)) it went in one ear and out the other 13. MP: Yeah (.) she didn’t- went through her head I think 14. FP: Yeah 15. MP: ((laughs)) 16. FP: And then my brother and- well I told my brother and his wife well (.) when she was pregnant but she hadn’t told any of us 17. R: Hmm 18. FP: So I said oh (.) you know (.) you know if you feel you ever need one to test or (.) and David (.) you know (.) my brother 19. R: Hmm 20. FP: I am a carrier (.) ohh right (.) you know. 21. R: But no-one sort of22. FP: No 23. R: Taken the- given the24. FP: No 25. R: Whatever curiosity they’ve got to26. MP: No

M. Arribas-Ayllon et al. / Social Science & Medicine 66 (2008) 1521e1532 27. FP: (.) No just my eldest sister really which I think she would- she- she’s the one who had the amnio as well (.) I think if she was think- planning to have a second- I think she would now think oh (.) let- let’s go and have some blood taken.

In turns 1e4, FP establishes that none of her siblings has pursued carrier testing for Cystic Fibrosis. After providing confirmation (‘I’ve told them all’), FP points to the contrastive character of the ‘eldest sister’ whose ‘PhD in biology’ counts as justification for responding positively. In turns 10 and 11, the disclosure of carrier status (‘By the way, I’m a carrier’) and its receipt (‘ahh’) are framed as a dialogue between the sisters. Blame is implicit in turn 12 as the eldest sister’s action is contrasted with that of the youngest. The formulation ‘it went in one ear and out the other’ carries the suggestion that FP’s disclosure made no impact. This is cast as irresponsible, unlike the mother’s apparently genuine ignorance/non-understanding in Data Extract 4. Blame work is also jointly managed as MP alludes to the implied fatuity (note laughter) of the youngest sister (turn 13). Continuing the theme of disclosure, FP orients to the brother (David) and ‘his wife’ in turn 16. The passing remark ‘when she was pregnant but she hadn’t told any of us’ is a subtle index to misalignment. Responsibility for disclosure is signalled via reported speech (‘So I said’) as FP offers support to the sister-in-law (turn 18), followed by the act of disclosure to her brother (‘I am a carrier’). His reply, reported in turn 20 (‘ohh right’), conveys feigned interest and/or nonunderstanding. This is contrasted with FP’s alignment with the eldest sister who has undergone ‘amnio’. In the hypothetical event of ‘planning’ another child, the eldest sister is heard to consider having a genetic test: ‘oh, let e let’s go and have some blood taken’. An interesting aspect of the blame work performed here is the way disclosure is (not) reciprocated by siblings. In the case of the older sister, knowledge of biology explains why she responds in a positive and praiseworthy manner while lack of understanding is posed as an obstacle to risk communication in relation to the other siblings. In the final extract, three participants are present in the interview: the mother (M, 36 years), the father (F, 39 years) and the researcher. M was identified as a carrier of Fragile X after her son was diagnosed with developmental delay and behavioural difficulties. The couple are currently waiting for carrier testing of their 6-year-old daughter. M’s cousin (Heather) also has a son with Fragile X. Blaming occurs in relation

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to Heather who fell pregnant before testing positive as a carrier. Data Extract 6 1. R: and have the rest of the family been tested 2. M: my aunty Jen got tested and her two children are grown up but the son’s got children and it came back negative with her (.) erm (.) obviously Terry has got it because both daughters were then tested and then Jane was tested and Melissa’s recently been tested and it was positive on her so there wasn’t any doubt (^^^^^) so for him there is no reason for him to have the test because he’s got (^^^^^^^^) so there was no point going down that road with her (.) my mum is the eldest (^^) but the daughters are aware (^) 3. R. and they haven’t decided to (^^^^) 4. M: well Heather has and it’s come back positive that she’s (^^^) my gran put it this way was very (.) it’s not very often my gran crossed her words but my gran was very upset that she’d gone ahead and got pregnant knowing that fragile X (^^^) 5. F: it was (^) by us wasn’t it (^^) 6. M: so she’d got pregnant first had the baby and then got tested and it’s come back positive and baby is showing and the baby is showing problems but it may have nothing to do with you (.) you don’t you know 7. R: but there seems to be a kind of issue about responsibility 8. M: yeah 9. R: about knowing before 10. M: it’s not like gran said (.) if she didn’t know before then if she’d gone ahead and got pregnant then that’s okay you know we wouldn’t have gone on at her (.) that was her decision but then to get pregnant and then go and have the test done to see if there’s fragile X when she knew this before she started to (.) decided to start a family (.) she wasn’t pregnant (.) told members of the family it just seemed an odd thing to do 11. R: has she explained why she did it in that order if you like 12. M: no she’s not (.) she’s the sort of person who is ignorant of things 13. R: Umm 14. M: I wouldn’t say she doesn’t care but (.) 15. R: but then it’s kind of intriguing that she decided to have the test at all do you know what I mean 16. M: that’s what me and Jane [M’s cousin] were puzzled with

As we can see, an account of family testing is offset by the cousin, Heather, who, despite ‘knowing’ the hereditary risks, tested positive after pregnancy (turn 4). It is worth noting how blame allocation is accomplished through the figure of the grandmother who ‘crossed her words’ and ‘was very upset’. The resources for establishing blame are also encoded in the temporal reporting of events (‘so she’d got pregnant first had the baby and then got tested’), from which M can impute agency and intention, casting Heather as careless and irresponsible (turn 6). The formulation ‘the baby is showing problems’ provides further evidence of blame, which is promptly mitigated to soften the

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charge: ‘it may have nothing to do with you (.) you don’t know’. The grandmother, reportedly, contrasts the hypothetical scenario of not knowing with the actual stateof-affairs of Heather’s culpability. Here, the voice of a third party is an effective distancing strategy to justify the family’s position on blaming (‘we wouldn’t have gone on at her’). Again, the temporal ordering of events is crucial in constructing an account of Heather’s blameworthiness. The reflexive statement ‘it just seemed an odd thing to do’ effectively suspends her conduct as anomalous, warranting an account of character. The formulation e Heather is ‘the sort of person who is ignorant of things’ e is a useful strategy to mitigate blame so as to appear concessive rather than overly judgemental. M performs both, firstly, by framing her ‘ignorance’ as an excuse; and, secondly, by implying that Heather is not malicious (turn 14). However, her anomalous conduct becomes the object of further speculation in the remaining turns. Her ‘intriguing decision’ to have a test forms the basis of alignment with another cousin (Jane), which allows M to subtly index her own responsibility as someone who cannot comprehend Heather’s actions. Discussion and conclusion In our analysis, we have focused on the organisational structure of accounts where blameeresponsibility is the distinguishing feature of how families manage and (not) disclose their genetic status and the attendant genetic risk for ‘significant’ others. We have taken genetic responsibility to mean the explanatory frameworks and devices through which other family members figure as participants in the ethico-moral management of genetic information. As we have argued, this referent usually entails acts of disclosure premised upon open communication, reciprocity, and recognition. Our analytic assessment of blamee responsibility has been framed along four inter-related questions: who initiates blame?; who are blamed?; what are they being blamed for?; and how is blame allocated? The first is perhaps least difficult to tackle. Given the research interview context, the accounts of blame originate from the participants being interviewed. Secondly, the targets of blame are either vertically located (e.g. parents, grandparents) or horizontally located (e.g. sibling, partner, cousin). In response to the third and fourth questions, we suggest, respectively, that lapses in genetic responsibility and lack of genetic understanding constitute the two most dominant reasons for blaming others and that such

accounts are delicately constructed by deploying a range of rhetorical devices. Broadly speaking, family members appear to engage in blame for two reasons. First, other-oriented blame arises over competing versions of genetic responsibility. In Data Extract 1, we see how the fact of genetic transmission provides the daughter resources for explicitly blaming the father for biological responsibility about circumstances which precede the event of her positive test result. However, in reconstructing disclosure to her father, character work reveals an important tension between the fatalistic/self-abusive father and the mother/daughter who positions herself as having active reproductive responsibilities. Fatalism as the resignation or acceptance of one’s genetic fate not only exonerates oneself from blame (Williams, 1983), but has morally significant implications for patterns of disclosure. In Data Extract 3, we see how the older sister’s fatalistic attitude is foregrounded to justify why open communication is absent in the sister’s family. Competing views of genetic responsibility are also projected as justification for not disclosing risk to other relatives, especially when genetic information can be used to expose family secrets and apportion blame retrospectively (cf. Data Extract 2). Additionally, other-oriented blame arises over incongruent or disparate understandings of genetics. In Data Extract 4, we see that when disclosure is misaligned between offspring and parents, blaming the parents is a subtle and elaborate activity. The presumed complexity of genetic information/technology exonerates the parents from having to engage in open discussion about risk. The repeated formulations of (non)attribution of blame and the proverbial ‘it’s like ignorance is bliss’ are some of the mitigation strategies that excuse parents from genetic responsibilities. A generational aspect to blame allocation is evident here with regard to levels of genetic understanding, in which event work takes the upper hand in comparison to character work. Thus, ignorance on the part of parents constitutes a legitimate excuse. In contrast, lack of genetic understanding as far as the siblings are concerned is dealt with differently as they are held to account for not disclosing carrier status to siblings. In Data Extract 5, contrasting accounts of disclosure index knowledge as a precondition for reciprocating and exchanging understandings of risk. Formulations of ignorance or indifference on the part of siblings suggest that attributions of character, rather than events, are significant explanatory resources in accounts of failed disclosure. For instance, in Data Extract 6, this is developed more strongly through character work in relation to the cousin who fell pregnant

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before testing positive as a carrier, thus reinforcing anomalies of her conduct as irresponsible and feckless. So blaming others over competing or discrepant views of genetic responsibility and genetic understandings often entails claiming responsibility for open disclosure. At another level, more subtle rhetorical work is needed not just in terms of the content or the manner in which blame is attributed but how it is exonerated in mitigated and sensitive ways. Our relatively limited corpus does not allow us to claim that there are clear generational circumstances whereby parents are subject to more salient and elaborate attempts to exonerate on the grounds of not understanding genetic risk. Nonetheless, when siblings, cousins and partners are blamed for their ‘ignorance’ and/or indifference, there is noticeably less duty to exonerate. This uneven use of exoneration towards family members is a potential finding, suggesting that those who are still active in their reproductive responsibilities are likely to be differentially accountable to managing genetic risk, including open disclosure. By extension, it may also indicate that there is nothing to be gained by explicitly blaming those who have finished their reproductive years and whose life histories cannot be changed. As we have demonstrated, the presentational work of aligning oneself with a moral order would indicate that the sphere of genetic responsibility is more nuanced if we consider blameeresponsibility not as mutually exclusive categories, but as a complex relational pair constituting accounts of misaligned family communication. The differential distribution of genetic responsibility is the work of familial problematization. Accounts of fatalism and non-disclosure, unrequited disclosures of genetic status, and characterisations of ignorance e to extend Novas and Rose’s (2000: 485) notion of genetic risk as inducing ‘new and active relations to oneself and one’s future’ e suggest that the novel transformation of self, endowed with new ethical responsibilities, is patchy and uneven. It is our contention that the sphere of genetic responsibility is not necessarily characterised by the uptake of more genetic information or by ideals of open communication, but require a more subtle negotiation of family ties. These incomplete and partial trajectories of (non)disclosure suggest that claiming genetic responsibility for open disclosure is performed by contrasting the self-other dimension. Exoneration strategies are also suggestive in that some family members, more than others, are held accountable for the management of familial risk. While on the surface they may appear unorthodox or unethical, families have to work harder through character and event work, through contrast and constructed

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