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http://dx.doi.org/10.1558/japl.v9i3.25743
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Intentionality behind agentive action is regarded as a cornerstone for imputing responsibility (and blame). Responsibility is a double-edged phenomenon: reporters and policemen are endowed with responsibility to determine
whether their target of investigation is someone being responsible. Generally speaking, in a professionalclient encounter context, professionals have
the responsibility to monitor if clients are being responsible when seeking
a service, e.g. parents requesting genetic tests for their children. In return,
parents are expected to display their responsible selves and actions in order to
procure the intervention i.e. genetic testing that they want.
Of relevance here is Scott and Lymans (1968: 46) perspective on accounts:
a statement made by a social actor to explain unanticipated or untoward
behaviour. Along the lines of Austin (1991a [1956]), they suggest a distinction
between excuses and justifications: Excuses are accounts in which one admits
that the act in question is bad, wrong, or inappropriate but denies full responsibility. Justifications are accounts in which one accepts responsibility for the
act in question, but denies the pejorative quality associated with it (Scott and
Lyman 1968: 47).1 In a sense, what constitutes an excuse or a justification may
not be distinctly manifest at the discoursal level, as the onus seems to lie on the
characterisation of the action itself as untoward or otherwise from someones
perspective. As we will see, a request for childhood genetic testing may be
framed by parents as a justification, which professionals might regard as an
excuse on parents part as a means to an end.
According to Austin (1991a [1956]), excuses are the means by which we try
to escape responsibility. An excuse amounts to acknowledging, retrospectively,
that what happened was a bad thing, and that the person offering the excuse
did it, but not bold-facedly or intentionally, and therefore s/he cannot be held
responsible for the action in question. In a related paper, Three ways of spilling ink, Austin (1991b [1966]) offers a nuanced distinction between acting
intentionally and acting deliberately or on purpose. He considers the example
of feeding peanuts to penguins when there is a public notice announcing Do
not feed the penguins. In this case feeding the penguins may be regarded as
intentional action, but not undertaken deliberately or on purpose to kill the
penguins (especially if the person has not read the notice and/or is unaware
that peanuts are fatal for penguins). Acting impulsively thus does not presuppose deliberation or motive.
Moreover, following Aristotle, individuals can be held responsible for only
voluntary actions (as opposed to actions that occur under compulsion or due
to ignorance). In their characterisation of responsibility, Hill and Irvine draw
attention to the interface between knowledge and agency:
To interpret events, to establish facts, to convey opinion, and to constitute interpretations as knowledge all these are activities involving socially situated participants,
who are agents in the construction of knowledge as well as being agents when they act
on what they have come to know, believe, suspect, or opine. (Hill and Irvine 1993: 2)
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The selfother dynamics brings us to the notion of role-set (Merton 1957; for
its application to professional settings, see Sarangi 2010, 2011). Responsible
action is inherently tied up with the notion of the agent as a strong evaluator
(Taylor 1991: 216). This is particularly evident in decision-making situations
which routinely involve a role-relational dimension; i.e., one makes a decision in a certain role capacity and such decisions may have consequences for
oneself as well as for others. As Emmett (1966: 15) points out:
what people think they ought to do depends largely on how they see their roles, and
(most importantly) the conflicts between their roles.
Decision-making thus indexes agency and rational choices based on knowledge systems and they are usually other-oriented, as we will see in the display
of parental role-responsibility in genetic counselling sessions. Extended to
the childhood genetic-testing scenario, the decisional choices a parent goes
through may foreground potential conflicts embedded in the available roleset: a mother, a grandmother, a wife, a reproductively active woman etc.
In the genetic counselling setting, which is our research site, the decisions
clients make may come across as Iactions, without much reflection on me as
others would see it from another perspective. The counsellors/therapists role
then becomes one of filling this gap, in encouraging reflection on clients part,
both retrospectively and prospectively (Sarangi 2010). Although, for Mead
(1934), the anticipatory responses are about the generalised other rather than
specific others, in the genetic counselling setting, both the generalised and
the specific others are at play as the common good and individual family
members become invoked.
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In a sense, parental responsibility and parental rights become rolled into one.
Communicatively, the medical consultation resembles a bargain encounter,
with parents positioned in a no-win situation.
It is worth noting that in conventional medicine, tests and test results are aimed
at uncertainty reduction and for confirmation of diagnosis as a precursor to
medical intervention. In the context of genetics, only a few diagnostic tests
are currently available. The other types of tests carrier testing and predictive
testing not only involve cumbersome and costly procedures but could fail
to provide definitive results. Moreover, a genetic test on the child may have
adverse effects such as loss of future autonomy to make informed decisions
and of the right to confidentiality, as well as an impact on upbringing and
influence over future career options.
Several researchers (Hallowell 1999; Forrest et al. 2003; Hallowell et al.
2003; Downing 2005; Hallowell et al. 2006; Arribas-Ayllon et al. 2008a, 2008b)
have examined themes such as genetic responsibility, blame and guilt on the
basis of research interview data. However, there are very few attempts at examining aspects of responsibility and autonomy as they unfold in the genetic
counselling setting (see Sarangi 2000, 2010; Pilnick 2002a, 2002b; Sarangi and
Clarke 2002; Sarangi et al. 2011). In a single case study, Sarangi and Clarke
(2002) examine the subtle negotiation of childhood carrier-testing within an
ethos of non-directive counselling by contrasting the childs future autonomy
against the parents rights and role-responsibilities.
The familial basis of genetic disorders puts the client in a range of competing role-sets in the time-frames of past and future events. It then becomes
the task of the genetic counsellor to elicit what the attendant rights and
responsibilities vis--vis self and other relations might entail in a given case.
The notion of responsibility in its moral sense is relevant here, where right
and wrong actions do become implicated, as well as what ought to be done.3
But more importantly, causal responsibility is also in play as far as potential
consequences of actions are concerned. Both counsellors and clients move
between the trajectories of responsible actions and responsible selves and it is
this interface which is my analytic focus.
In what follows I focus on a particular genetic condition called polycystic
kidney disease (PKD), normally associated with an enlarged kidney, which
can present cysts at a later stage. The manifest symptoms are high blood pressure and urinary infection. The clinics I draw my data from are joint clinic
sessions involving the parents (PF and PM), the children (CF and CM), the
genetic counsellor (G1), the kidney specialist (K1) and the genetic specialist
nurse (N2) (see Appendix for transcription conventions). In my analysis, I
focus on how parents justify their need or right to know a childs genetic status
and how in their accounts moral responsibility and causal responsibility are
conflated vis--vis the healthcare professionals commitment to safeguard the
childs autonomy and best interests.
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The kidney specialist (K1) opens the discussion by inquiring about the
parents level of awareness concerning the advantages and disadvantages of
childhood testing. Rather than responding directly to K1s concerns, PF, in
turn 02, nominates her reason for testing her son. We see here a form of lay
diagnosis that bed-wetting may be related to PKD. PF offers several epistemic
assessments: its common with boys (typical case formulation); CM wets the
bed a lot (extreme case formulation); very rare have a dry night (extreme
case formulation). PF comes across as a responsible mother who has been
constantly vigilant and seeks clarification about the possible link between bedwetting and PKD. This sense of responsibility I ought to do something, in
the least talk to a professional is implicitly contrasted with her mothers
indifference mam hasnt said nothing (turn 12). In addition to a display
of moral responsibility on PFs part, the causal responsibility is embedded in
her clarification-seeking in that if her assumption about the linkage between
bed-wetting and PKD has any basis, then CM is at risk of developing PKD.
As a way of reassurance, K1 offers epidemiological figures (about one in ten)
and then goes on to seek family history of bed-wetting which yields little certainty, followed by a discussion of advantages and disadvantages of childhood
testing, which was temporarily interrupted (see turns 2ff).
Later in the session (Extract 1.2), K1 orients to the moral/ethical issues
surrounding childhood testing.
Extract 1.2
01 K1: having them tested young (1.0) u:m (1.0) I dont know whether youve
(.) thought at all about whether the children should have tests
02 PF: *mm*
03 PM: (havent spoken ^^^)
04 K1: not really no no I mean its not a pressing issue at all (0.5) um (.) then of
course there is the question of whether the children should have the
opportunity to decide for themselves (.) [and]
05 PM: [yeah]
06 K1: of course if youve already done it (0.5) then they dont have that (0.5)
opportunity to decide for themselves (0.5) but it is worth thinking as
they get to teenage (.) um that its probably fair that they should at
least have the knowledge that this problem is going on in the family
because if they dont have knowledge (0.5) they dont have any (.)
choices (0.5) and uh (1.0) again they themselves can ask either for more
information (0.5) (okay) from yourselves or (.) or from ourselves
whichever is easy (but quite often) the GP (.) and (.) they can (0.5)
consider whether they want to be tested (.) um (1.0) in their own time
a::nd um (0.5) they need to know about the advantages and
disadvantages obviously (.) but in addition they need to be able to
(0.5) um (.) take on board the fact that it is a genetic condition and
therefore they might want to (0.5) take that into account when theyre
planning their own families
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its just (.) kno::wing is (.) well knowing (.) we just know (0.) peace of
mind isnt it (.) you know its [(.) yeah (0.1) (y- know (.)]
[one way] or the other (.) but I mean (0.2) its something (I usually) (.)
Its not like every day like (.) its (.) yeah y- you might (^^^^ ^^^^)
no (.) its just every now and again (.) you might think about it [^^^]
[but its] not (.) sort of (.) yeah (.) its not (.)
and (.) feel a bit sad about it (.) but (.) no:: (.) its not something you
dwell on
07 G1: its not playing on your mind [(.)]
08 PM: [no::]
09 PF: [no::]
10 G1: no (.) and [(.) (>>I mean<<)]=
11 PM: [especially the way] he is [(.) cos hes such a live wire]
Wanting to know is typically foregrounded as a justification in favour of childhood testing (Clarke et al. 2011), but this may be seen as an excuse, a meansto-an-end stance, as far as the professionals are concerned. Note that wanting
to know equates with benefits of knowing rather than risks of knowing
(Sarangi et al. 2003). In Extract 2.1, PF downplays the risks of knowing when
she says its not something you dwell on (turn 06). There is a side sequence
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308
06 G1 [right]
07 PF = cause if like ((CM)) hasnt got it theres nothing to say that (.) if I have
another child (1.0) they wont have it cause (1.0) you know some might
have it you know
Prior to the opening of the extract, G1 has offered a very elaborate explanation
about the functioning of genes and chromosomes. The complexity involved
(getting blood samples from as many people in the family as possible, turn 03)
in mounting a genetic test in order to get a definitive result as far as CM is
concerned is seen as a difficult, if not impossible, option. In light of this awareness, which remedies her previous misperceptions about what a genetic test
might imply and that a test result may not be conclusive, PF juxtaposes her
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sibling role and her parental role and settles for routine annual blood checks
for CM (turn 04, turn 19). This may be seen as an adequate display of moral
responsibility under the circumstances (as long as I dont think that I havent
done anything, turn 06). The causal responsibility is implicit: if I get CM tested
then I can be cautious about future pregnancy and be protective about the
future child. The complications associated with the testing procedure are
directly contrasted with a sense of moral obligation, which echoes the no win
situation in Silvermans (1987) sense. G1s comment that even an elaborate
family-wide blood test may not generate a hundred percent definite result
aligns with PFs position, especially since PKD is not life-threatening.
The interaction continues in Extract 3.3, as the topic shifts to a possible
future pregnancy and the associated risks.
Extract 3.3
21 PF: just (.) um like if we I was to have any more children its not as if (.)
youre saying you shouldnt have any more children because of this
polycystic kidneys [(.)]
22 G1: [no]
23 PF: thats whats worrying me you know (.) as well if I wanted another
child (1.0) am I endangering it by (1.0) you know if I had another child
would I be endangering the child (.) if this (.) if (.) if they both had
polycystic kidneys [(.)]
24 G1: [no]
25 PF: like the way Im feeling now I mean theres nothing wrong with me at
the minute [(1.0)] so
26 G1: [yeah] >>I think<< obviously another child (.) there would be this fifty
fifty [chance]
27 PF: [yes]
[07 turns omitted where G1 prioritises PFs own health status concerning her
future pregnancy]
35 PF: = basically I think I just want someone to say (.) no you shouldnt have
ch- any more children or yes you will be okay to have children
36 G1: right [((laughs))]
37 PF: [cause ob- you know]
38 K1: the ch- you n- I mean the the decision about having children [(.)]
39 PF: [mm]
40 K1: thats for you and your husband (.) what we can do is try and help you
understand the risk [of ] (.) [of (hel-) to your health (.) and (^^^^)]
41 PF: [yeah] [well I mean I dont want to have (.) have any more children] if
its going to in- (1.0) do you know what I mean if its going to (1.0)
I *d- (^^^^)*
As we can see, PF frames her dilemma in an if-then format (turn 23), as one
bordering on both moral and causal responsibility in urging for a categorical
answer to her anxieties about future pregnancy (turn 35). But K1 skillfully
steers clear of a direct response by refocusing on PFs own health during the
pregnancy (turn 2830), given that she is susceptible to infections and high
blood pressure. In turn 41, PF again resorts to an if-then formulation, albeit
cut-off, to foreground her sense of causal responsibility. In response, G1 refers
to PFs previous pregnancy experience despite her PKD status in turn 42 (you
had a good pregnancy). The decision is left to PF and her husband, aided now
by relevant risk information.
In the final extract, Extract 3.4, PFs continuing concerns about moral and
causal responsibility, bordering on guilt, become pronounced.
Extract 3.4
01 PF: you know would it be cruel if I had another child if they got it when
theyre older
02 K1: so so we were just talking about (.) your health in pregnancy (.) then
the other thing is [(1.0) (giving you)]
03 PF: [they have you know if I have any]
04 K1: you have a risk of passing (.) the gene on (.) um ((CM)) might have it
fifty fifty the next baby might have it fifty fifty chance the next baby
might have it [(.)] fif- =
05 PF: [no ((laughs))]
06 K1: = (.) so um (.) uh so there s- two slightly separate [things]
07 PF: [yeah]
08 K1: for you to think about obviously both related to the [polycystic]
09 PF: [yeah]
10 K1: kidney disease but one is (.) uh you know w- is it putting a stress on you
and of course now youve got one child (.) you dont want to risk your
health so you couldnt look after the present child and and [the]
11 PF: [mm]
12 K1: next child (.) u- that doesnt sound like a a big problem *at the
moment* um and the other is the risk of passing it on (.) to your babies
(.) but since you havent had much contact with people whove had any
complications from the polycystic kidneys its difficult for you to
[envisage isnt it]
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discounting the chance of a young baby inheriting PKD (turns 2937, data
not shown). This no doubt contributes to an understanding and assessment
of causal responsibility. The knowledge that a genetic test procedure involves
more than simple blood extraction from herself and that an elaborate testing
protocol involving other family members can still deliver an inconclusive
result contribute towards PFs decision not to go ahead with the test, which is
evidenced at the close of the encounter.
5 Conclusion
The notion of responsibility is manifest in accounts underpinned by agency,
intentionality and epistemic stance as well as orientations to selfother relations. In the context of seeking childhood testing, parental accounts of genetic
responsibility can take the form of moral and causal justifications. The findings suggest that parental accounts orient towards the following: balancing of
advantages and disadvantages of childhood testing, benefits of knowing for
present and future purposes, and the role-relational work underpinning the
decision about testing.
Although professional stance against childhood genetic testing seems to
align with the code of practice, the different client scenarios do not always fit
a neat pattern. As we have seen, professional task responsibility is manifest
clearly in the outlining of advantages and disadvantages of childhood genetic
testing. Attention is also drawn to the fact that the test results may be inconclusive and, where more definitive, the benefits of knowing the childs genetic
status cannot override the risks of knowing. This then forms a robust basis for
genetic counsellors to remain committed to safeguarding the childs autonomy
and their best interests.
The parental reasoning behind the request for childhood testing can
at times undermine the childs future autonomy, including the latters right
not to know, as is clearly evident in the case of PKD/B. The right to make
informed decisions is in effect being taken away from them as, given their
young age, they cannot participate in the decision-making process. This issue
is also of significance in the case of adolescents and adults. The moral right
of parents to know the childs genetic status for their own peace of mind then
becomes a one-sided, means-to-an-end excuse, which professionals wish to
guard against, especially if there are no immediate medical benefits on offer in
terms of treatment and cure and if the disadvantages outweigh the advantages.
Parents, however, tend to legitimise their right to know, as not doing anything
could possibly be seen as irresponsible indifference. Causal responsibility thus
comes to the fore in parental accounts.
What does emerge from the preceding analysis is the difficulty in keeping
moral responsibility and causal responsibility apart. As we have seen, causal
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Notes
1. See also Taylor (1972). The notion of blame is implicated in responsibility
(Pomerantz 1978, Shaver 1985).
2. See Tates and Meeuwesen (2001) for an overview.
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