Tentative (Id) Entities: On Technopolitical Cultures and The Experiencing of Genetic Testing

Ulrike Felt
Ruth Mller
Tentative (Id)entities:
On Technopolitical Cultures and the
Experiencing of Genetic Testing
April 2010
Department of Social Studies of Science
University of Vienna
preprint
STS
2010

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If only the preprint is available, you should cite this paper in the following way:
Felt, Ulrike, and Mller, Ruth (2010). Tentative (Id)entities. On Technopolitical Cultures
and the Experiencing of Genetic Testing. Published by the Department of Social Studies
of Science, University of Vienna, April 2010.
Available at http://sciencestudies.univie.ac.at/publications

Address for correspondence:
Ulrike Felt
Department of Social Studies of Science
University of Vienna
Sensengasse 8/10
A-1090 Vienna, Austria
T: ++43 1 4277 49611
E-Mail: ulrike.felt@univie.ac.at

http://sciencestudies.univie.ac.at
Tentative (Id)entities
On Technopolitical Cultures and the Experiencing
of Genetic Testing
Ulrike Felt and Ruth Mller
The practices around genetic testing for hereditary breast and ovarian cancer
(HBOC) in one major counselling centre in Austria are at the core of this arti-
cle. Our study investigates how people undergoing genetic testing try to make
sense of this experience that is perceived to be new and uncommon in Austria
and that is thus taking place in a setting not validated through public insur-
ance support and is not yet embedded in any greater societal narrative about
its merits, perils and overall value. In particular we aim at exploring what ge-
netic testing means on the individual level but also how it relates people to
different forms of collectives genetic families, hybrid collectives and lar-
ger biosocialities. We will follow how as tested persons are transformed into
biomedical entities, novel forms of identities are co-produced. In our analy-
sis thus both entities and identities appear as inherently tentative as people
move through the spatiotemporal landscape of biomedicine and society.
Peoples accounts of genetic testing will be shown as deeply entangled with a
specifically Austrian technopolitical culture, with broader civic epistemologies
prevalent there, but also with diverse other thought-styles of social communi-
ties that people are part of. Investigating genetic testing in Austria in such a
manner is meant to raise awareness of how much local differences in tech-
nopolitical cultures might matter when it comes to the implementation and
up-take of a seemingly global biomedical technology.
Introduction
Yes, I remember, we all sat there and then she explained the whole thing [the test
procedure] to us, one by one. We all sat there not my sons, they didnt come with
us. They just said: Oh, they should tell you., but they didnt tell me. Then, on our
way home, we talked, like Oh, I had thought I would have it from daddy, the gene.,
or Why do we all have it? At least one of us could have been spared!
Today it is just the way it is. We have accepted it well accepted? I dont know how
to express that. We just have it and now we just say: Others have the gene for heart
attacks, and we just have the gene for breast cancer. And even if, we at least can do
something about it. We are in good hands, we say, we really are. My cousin always
says to me that nothing better could have happened to all of us than me joining
them [the team at the hospital].
(Woman tested positively for a BRCA mutation)

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Breast cancer has become a topic of broader public awareness in the Austrian
context for a little more than a decade. In the growing public debate, breast cancer is
mainly framed as a disease related to lifestyle choices, such as diet and exercise. How-
ever, about 5-10% of all cases are believed to be due to genetic predispositions such as
mutations in the so-called Breast Cancer Genes BRCA1 and BRCA2, which appear to
raise the lifetime risk of breast cancer to up to 84% (Wagner and Kubista, 2003), fre-
quently with early onset of the disease and an additional elevated risk for ovarian can-
cer. Since 1994 it is possible to identify such mutations by genetic testing. In Austria,
these genetic causes of breast cancer and more so the possibility of genetic testing are
at the very margins of public awareness, although genetic counselling and testing for
hereditary forms of breast cancer is available in some Austrian hospitals. However,
these services are offered against a somewhat awkward backdrop: The institutional
embeddedness of such counselling centres is fragile as funding structures for genetic
testing are rather provisional. In the case of hereditary breast and ovarian cancer
(HBOC) no official funding
1
for counselling and testing as a clinical and hence routine
procedure existed at the moment of the study. Medical centres wanting to offer this
service thus had to integrate clinical testing into research agendas. Moreover, there
appears to be little awareness of these services on the side of the general practitioners
and gynaecologists, resulting in rather low reference rates to counselling centres. Most
potential test candidates get to know about genetic testing either by coincidence, or
because they have proactively searched for a way to find out reasons for their disease-
laden family history. However, centres are up to capacity with the relatively low num-
bers of clients: due to the delicate funding situation, the resources of the counselling
centres are rather limited, leading to long waiting periods for the people who request
testing. From the moment of testing it may take up to two years to get definitive re-
sults about their genetic status.
Our fieldwork narrative interviews and participant observation took place in
what could be called the leading counselling and testing site for HBOC in Austria. The
centre is run by dedicated doctors, who also engage in raising public awareness about
the genetic causes of breast cancer. Under these specific conditions, but also rooted in
what we will label a specifically Austrian technopolitical culture (Felt et al., 2009b), our
study investigated how people undergoing genetic testing try to make sense of this
experience, an experience that is perceived to be new and uncommon in Austria, that
is taking place in a setting not validated through public insurance support and hence
has yet to be embedded in any greater societal narrative about its merits, perils and
overall value.
Over the past decades a broad body of literature in STS and sociology of medi-
cine has emerged offering analysis of the up-take of genetic testing. While those ana-
lyses dealing with policy and more structural aspects of genetic testing (e.g. Par-
thasarathy, 2007) take the national framings into consideration, much of the literature
addressing patients perspectives engages only marginally with the importance of
broader national technopolitical cultures. Our analysis aims at addressing this lacuna
and specifically draws attention to how in the process of genetic testing in our case
for HBOC those tested continuously work on making sense of their genetic predispo-

1
Genetic testing for HBOC was neither state-funded nor covered by health insurance; though there
was some public funding available from 2007-2010, it is unclear if this will continue.
Felt/Mller: Tentative (Id)entities


4
sition within a specific local context with its master narratives, modes of ordering and
epistemologies. Thus we aim at connecting the broader macro-context with this local
testing centres configuration as well as the personal experiences and knowledge
forms of our interviewees.
We will start by presenting a number of relevant debates in STS and sociology of
medicine that will help us frame our analysis. We will first outline some of the key-
issues of biomedicalization, then elaborate on how genetic testing contributes to
the redefinition of individual and collective forms of identities and finally reflect on the
ways the broader societal context matters within these processes.
After presenting our material as well as some methodological considerations,
our analysis will address the issues at stake from two different perspectives: We will
first begin by looking at how the tested individuals narrate how they got involved with
genetic counselling and testing. How did they encounter this possibility and what do
they perceive as the expectations they had when entering the process? These mo-
ments are interesting as they give us a glimpse of how they have reconstructed their
personal way into the system. In a second step we will reflect how through the process
of counselling, the testing itself, and the repertoire of ways of dealing with test results
tested individuals become part of different collectives that shape their identities in
multiple ways. We will show how pivotal these are for the ways in which people make
sense of their experience. The quote at the beginning of this paper nicely reflects
these distinct forms of collectives different configurations of we and they that
coexist and shape local practices of knowledge-making as well as forms of biomedical
agency. Three different collectives will attract our attention. (1) We will analyse how in
the process of getting access to testing, as well as during and after testing a person is
turned into a new kind of biomedical entity within both biomedical and more inti-
mate ordering systems. By entity we refer to the outcome of processes that transform
complex personal and medical stories. They materialise for example in the circle and
square icons of the genetic pedigree and entail also a particular kind of membership in
this familial network. Being performed as a biomedical entity and the new social and
moral orders that come along with this performance (Bowker and Star, 1999) is deeply
entangled with context-specific identity formation. In a second approach (2), we will
then focus on what can be called hybrid collectives (Rabeharisoa and Callon, 1998)
an assemblage of different kinds of experts, multiple forms of knowledge, such as
biomedical and experiential knowledge, but also diverse technologies and practices
which play an essential role in forming and transforming patients self-understanding
and identity. Finally (3), we will look at broader collectives created through genetic
testing extending beyond the realm of the counselling centre and investigate their
importance in the positioning work of tested persons.
In conclusion we will reflect on what this means for tested persons and how we
can understand what is often labelled as identity formation in genetic testing and how
this plays out in a specific technopolitical culture with all its resources, limitations and
potentialities.

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Biomedicalizing and being biomedicalized
The emergence of genetic testing for HBOC is part of the broader changes cur-
rently transforming medical practices through the infusion of bioscientific knowledge,
as well as approaches and techniques that originate from fields like molecular biology,
genetics or proteomics. The concept of biomedicalization tries to grasp those recent
transformations and their relation to societal changes, arguing for a co-production of
new medical practices and new social forms. Looking at a broad body of literature on
this phenomenon, biomedicalization can be understood as both an expansion and a
transformation of medicalization on individual and collective levels: If medicalization
was primarily the expansion of medical authority over aspects of life previously out-
side the jurisdiction of medicine (Clarke et al., 2003: 161) and regulated otherwise (e.g.
by the church), biomedicalization expands the authority of (bio)medicine into realms
of life that were not subject to any regulation before. Thereby, a number of new ob-
jects come into being: Phenomena such as genetic risk owe their very existence to
biomedical technologies and to a biomedicalized perspective on health, illness and life
itself. Following Clarke biomedicalization captures increasingly complex, multi-sited,
multidirectional processes of medicalization that today are being both extended and
reconstituted through the emergent social forms and practices of a highly and increas-
ingly technoscientific biomedicine. (Clarke et al., 2003: 162)
Genetic testing has become a symbol for biomedicalization. It depends on a
complex interplay of advanced technologies from different domains as well as on
interdisciplinary teams that consist of medical researchers, technicians, doctors, and
psychologists. Indeed, with Clarke (2003), we could argue that the counselling centre
we investigated exemplifies these epistemic reconfigurations of the medical practice
and research through biomedicalization: the social organisation of biomedicine has
shifted, new biomedical objects have emerged, the forms of interventions have
changed and so did their objectives. The border between health and illness gets in-
creasingly blurred, shifting the attention to the potentiality of illness. Illness thus con-
currently becomes potentially avoidable and health thereby an individual goal, a
social and moral responsibility and a site for routine biomedical intervention (Clarke
et al. 2003: 171). Responsibility for health is transferred largely to the individual with a
dense network of recommendations and regulations assuring citizens compliance.
Conscious self-surveillance and prevention become the duty of this biomedically re-
sponsible citizen, thus individual and collective dimensions of health and illness get
blended in multiple ways in the workings of biomedical logics that are both global and
local simultaneously.
Prevention and self-surveillance come with a tendency towards standardisation
of medical conditions, practices, and treatments, but also of health behaviour. This
brings about robust differentiations between the normal and the abnormal in rela-
tion to specific medical conditions, along with a repertoire of rational actions for
treating the abnormal. And standardization carries the danger of creating sameness
(Timmermans and Berg, 2003) in a biomedical setting that needs careful differenti-
ation with regard to the individual life situation of patients. Individuals are thus ex-
pected to combine biomedical interventions with lifestyle and behavioural changes in
order to address their bodily imperfections. This kind of governance can be thus de-
scribed as working from the inside out, encouraging individuals to enrol in new forms


6
of identities on individual and collective levels that are created through biomedical
categories and concepts.
At the core of biomedical identities are often specific standardized prob-
lem/solution packages, a clear set of doable problems (Fujimura, 1992), with a cor-
responding set of standardised technologies and practices that allow to deal with the
problems. In biomedicalized settings individuals afflicted by a certain problem are thus
mostly expected to subscribe to the whole package, which in turn clearly narrow(s)
the range of possible actions and practices (Fujimura, 1992: 176).
Hence, biomedical identities emerge in a framework of conditions that are on
the one hand highly experimental, fragile and new, and on the other hand also highly
restrictive, standardized and normative. Within these settings, taking on specific iden-
tities can be more favourable than taking on others. Yet, as we will show, taking on
new identities and engaging in related forms of agency does not necessarily imply a
definitive transformation of identity, but may be experimental, strategic and thus also
temporary. Certain identities may be taken on to gain access to desired features of
biomedicalization, while these same identities may be refused or reinterpreted in oth-
ers realms or phases of life. Thus, individuals have to be understood not just as pas-
sively affected by biomedicalization but they are agents within it, who negotiate, con-
test or enforce the meanings of biomedicalization. They do so, as we will argue later, in
contextually and locally situated ways and negotiate the meaning of potential identi-
ties on both individual and collective levels.
Genetic testing, collectives and biomedical identities
The emergence of genetic testing has been accompanied by a number of stud-
ies that focussed on the danger of reducing individuals to genetic conditions and ren-
dering them subject to genetic discrimination (e.g. Lippman, 1992). While these stud-
ies have rightly hinted at risk of being singled out, scholars like Novas and Rose have
attracted our attention to how, through biomedical practices like genetic testing, indi-
viduals are also subjectified through their location in a matrix of networks (2000:
490), stressing the relation between processes of identity formation and multiple
forms of collectivities arising in genetic testing.
For the case of genetic testing for HBOC, Pascale Bourret exemplifies this phe-
nomenon by arguing that through the process of counselling and testing, the individ-
ual patient is reconfigured into a family patient made out of clinical data (the dis-
ease), biological data (the gene and the mutation) and social data (family links and
degrees of relationship) (Bourret, 2005: 48). Thus, individual patients become enrolled
and positioned within a new emerging biosocial entity: the family at genetic risk.
The making of such a version of the family demands the transformation of each
family member into an icon within the genetic pedigree. In the process of drawing a
pedigree, family bonds are reworked and family history is rewritten; thereby, individu-
als are transformed into elements of a collective, familial, and thus biosocial body
and thus into objects of medical intervention (Nukaga and Cambrosio, 1997: 29)
which we label in our analysis as biomedical entities. The pedigree does not simply
represent a biological version of family but it constructs a reality of its own: a family
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that is (potentially) at genetic risk. Yet this process is rarely experienced as the con-
struction work it is: more so, it is perceived as a process of revealing this medically
meaningful version of family (Armstrong et al., 1998).
Studies from the area of sociology of medicine have shown that individuals that
have been inscribed into such a version of family appear to perform themselves not
as individuals per se, but as selves-in-relation, as interconnected to past, present and
future generations. (Hallowell, 1999: 616) Out of these relations, new forms of respon-
sibilities emerge within familial collectives, resulting in what Novas and Rose call the
burden of mutual obligations and caring commitments (Novas and Rose 2000: 490).
Decisions in the context of risk and illness management are no longer perceived to be
of individual choice but a more collective matter as they will potentially affect also
present and future kin.
In the case of HBOC, these responsibilities concern mainly obtaining and dis-
seminating knowledge about ones genetic status, engaging in risk-management and
persuading others to do so as well. (Hallowell, 1999) How individuals come to terms
with these responsibilities seems highly gendered with women engaging more in
managing their own and their relatives genetic risks. Having often experienced trau-
matic losses, they aim especially at sparing their children similar experiences. Women
are also observed to more often disclose their own and their relatives test results to
other family members. (d'Agincourt-Canning, 2001)
While on the one hand becoming entangled in a new geneticized version of
family, individuals also become either willingly or unwillingly implicated in a web of
professional and lay support networks as part of being identified at genetic risk
(Novas and Rose 2000: 949). This is in line with Rabinows (1996) argument that genetic
testing leads to so-called biosocialities, collectives that share exclusive medical prac-
tices and specific forms of agency and that are accompanied by pastoral keepers
(scientists or medical professionals). These keepers participate in the sense-making
processes and support the management of this new health situation. In some cases, as
Rabeharisoa and Callon (1998) have shown, these different actors merge into a hybrid
collective engaging in a common struggle to support, fund and conduct research.
These collectives share certain visions of problems and their potential solutions
and could be regarded as thought-collectives in Fleckian sense, performing a common
thought style (1935). These collectives must not necessarily be physically realized, but
often are also imagined communities created or reinforced through the biomedical
technology itself (see Anderson, 1983; Simpson, 2000). Novas and Rose elaborate on
this issue underlining that creating the individual at risk is linked to contemporary
norms of selfhood that stress autonomy, self-actualization, prudence, responsibility
and choice (2000: 205). Thus, we assume that the individual at genetic risk is co-
produced with manifest or abstract communities sharing distinct thought styles.
Yet Fleck also argues that people do usually belong to multiple thought collec-
tives, which can hold thought styles that frame a distinct problem quite differently.
Thus, the imaginary of being part of a specific thought collective, for example a collec-
tive of people that agree on prevention as the preferable way to relate to genetic risk,
can cause conflict with other thought collectives one belongs to, as we will see later.


8
Techno-political regimes:
Recontextualising the genetic testing phenomenon
So far we have (1) sketched out the rather broad changes brought about
through biomedical technologies such as genetic testing and (2) showed the diverse
forms of collectives formed along with this technological intervention. Many STS
authors have hinted at the important role of culturally entrenched routines, practices
and ways of reasoning when it comes to the way people relate to science and tech-
nology. Flecks work on thought collectives seems a valuable theoretical extension of
this existing work, as he uses the idea of cultural context in a much more heterogen-
eous manner than most other analysts. Thus when considering national political and
medical systems as well as broader technopolitical cultures, it is useful to incorporate
Flecks theory of multiple thought collectives, because it creates a better understand-
ing of peoples interpretations of biomedical developments. Further, it helps us to
trace how new biomedical practices and emerging identity claims are negotiated, con-
tested and enforced in a specific contexts. In fact much of the analysis of biomedicali-
zation undertaken so far has focused on a small number of countries (the UK and the
US being predominant among those studies), thus taking into account specific eco-
nomic landscapes, including the insurance sector and the corresponding legal regula-
tions and non-regulations. Only in rare cases do we find national comparative work,
which could help us to extrapolate on how biomedical practices and their societal
implications might vary significantly in different national settings depending on the
health care system, health governance structures as well as other culturally rooted
practices and value systems (e.g. Parthasarathy, 2007; Jasanoff, 2005). These studies
indicate that it is essential to understand the development and deployment of new
technologies such as genetic testing as embedded in what could be labelled different
national technopolitical cultures (Felt et al., 2009b).
In fact we will argue that national contexts play out on both a systemic and on
an epistemic level. On the systemic level we will address the intertwinedness of tech-
nological innovation, political processes and societal values using Hechts work on
techno-politics as the strategic practice of designing or using technology to consti-
tute, embody or enact political goals (2001: 256). We thus suggest reading the de-
ployment of genetic testing in a particular national context through the lens of what
she labels technopolitical regimes. This means we want to draw attention to the in-
stitutional dimensions, but also to broader myths and ideologies at work surrounding
genetic testing in a specific national context. Furthermore, it makes us alert to the pre-
scriptive dimensions of technopolitical regimes as well as to the broader visions of
socio-political order (2001: 258) that are inscribed in and performed by socio-
technical systems. Finally, it makes us understand that opposition is an integral part of
any regime, which means that forms of dissent and resistance are part and parcel of
the implementation process.
Turning to the epistemic level, we could refer to Jasanoffs (2005) argument on
how different political cultures deal with and make sense of technoscientific innova-
tion. Studying biotechnologies and working in a comparative perspective she sug-
gests that modern technoscientific cultures have developed (distinct) tacit know-
ledge-ways through which they assess the rationality and robustness of claims that
seek to order their lives (2005: 255). Jasanoff calls these knowledge-ways civic epis-
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temologies, pointing at broad, nationally rooted thought-collectives (Fleck, 1935),
sharing ways of thinking in our case about genetic testing. Science and technology
once on the public scene have thus to compete and coexist with other knowledge
claims. Hence, it becomes essential to understand how credibility is established and
how this might differ between political cultures. In a recent study comparing three
countries Austria, France and the Netherlands Felt and co-authors (2009b) have
extended Jasanoffs point by arguing that these civic epistemologies are closely inter-
twined with citizens epistemologies, expressed [] as the [personal and not necessa-
rily shared] resources individuals could draw upon to position themselves [] (2009b:
21). How people argue their rather personal ways of positioning is thus to be under-
stood as shaped by (but also shaping) a larger frame of civic epistemologies which
have been constructed over time and are distilled from multiple encounters and ex-
periences with technology (2009b: 21). Thus we can assume that citizens do develop
fine-grained context-specific understandings of new technologies and their social
meaning that is deeply culturally rooted. (e.g. Wynne, 1995) It is thus essential to pay
attention to the ways in which participants imagine and experience the transforma-
tion processes between knowledge, practices, potential actions and social orders in a
specific local context. Taking such an approach will allow us on the one hand to
understand how collectives in a specific larger cultural context frame the positions our
interviewees take towards genetic testing, while on the other hand it will allow us to
remain sensitive towards the personal experiences, knowledge forms and values. Thus
we work towards a much more contextual and less top-down analysis of how power
gets exercised in and through genetic testing.
Material and Methods
The data for this article was collected in the wider context of the EU funded pro-
ject Challenges of Biomedicine Socio-cultural contexts, European Governance and
Bioethics (CoB)
2
. While there was a broader corpus of data created in the project, the
material used here consists mainly of eleven open narrative interviews with people
who have undergone genetic testing for HBOC, contextual interviews with a physician
and a psychologist working in the counselling centre, as well as participant observa-
tion of an information evening for the centres counselees and their relatives. At mo-
ments we will refer to three focus groups on genetic testing with affected and non-
affected participants conducted in the wider context of the project.
Field access was rather difficult in the Austrian context: As there is a general cli-
mate of silence about genetic testing in the area of breast cancer, people who had
personal experiences with this novel biomedical practice were largely only willing to
share their experiences when approached through a gatekeeper in the field, the head
of the counselling centre. Hence we opted for cooperation with the counselling
centre, which had a number of pros and cons: Obviously, it allowed us to speak to
people who otherwise would not have engaged in interviews. Moreover, one of the
centres psychologists was present during the interviews and interviewees were of-
fered a post-interview session if wanted. The psychologists and physicians shared
their experiences with us and allowed us access to collective meetings, such as the

2
http://www.univie.ac.at/virusss/cobpublication.


10
information evening for HBOC we could attend. Yet, due to major concerns on the side
of the counselling centre that our interviews might stir up hurtful experiences or trig-
ger potentially difficult reflection processes, the format of our interviews was also re-
stricted: The interviews had to take place at the counselling centre, a fact which doubt-
lessly influenced the character of stories told and untold (compared to e.g. interviews
that would have taken place in the homes of the counselees). Moreover, it was the
counselling centres psychologist who chose and contacted the interviewees accord-
ing to our specifications.
After the approval of the study by the hospital ethics commission, we started
our interviews, ending with a final sample consisting of individuals that differed in
carrier or non-carrier status, gender, familial background, age, state of health as well as
familial affectedness by breast or ovarian cancer. We tried to roughly grasp the variety
of cases the counselling centre sees, thus showing the breadth of different positions.
Also, it is important to stress that all of our interview partners had been tested. Thus,
our fieldwork does not catch the perspectives of people who basically disapprove of
the idea of genetic testing or did the test but never came back to get the results.
The interviews took place between April and September 2006. Before each
interview, informed consent was obtained. For the interviews, an open narrative ap-
proach was chosen in order to allow individuals to develop their personal narratives of
their experiences with genetic testing as freely as possible. (Lamnek, 2005) We started
each interview with rather broad questions such as how the interview partners had
heard about genetic testing. Then we focused on the moment of deciding for the test
and followed what had happened then. The interviews were about 30-45 minutes in
length; all were taped and transcribed for analysis. Moreover, pre- and post-interview
discussions with the attending psychologist were also taped on occasion as contextual
data. During the series of interviews, the possibility arose to do participant observation
at an information evening for the centres counselees and their relatives that focussed
on the question of how to talk to children about the family history of breast and ovar-
ian cancer. During that event, field notes were taken.
To analyse the data, a grounded theory (Strauss and Corbin, 1998) approach was
the method of choice, implying an open coding procedure resulting in the specific
research foci presented here.
Empirical analysis: (Id)entity work in the context of an Austrian
counselling centre
Our analysis will proceed in two steps. First we will investigate how our inter-
viewees describe the genetic test as their entry point into the field. In doing so we will
get multiple individual accounts that allow different interpretations of why getting
tested made sense for them and what were the wider imaginations and aspiration that
motivated them to take this step. What becomes apparent is the multilayered charac-
ter of our interview partners accounts: While they are always on one level highly per-
sonal and very individual stories, they are also stories about an inextricable inter-
twindness of these individuals with a number of collectives that (trans)form in the con-
text of genetic testing. So while each story presents a unique and sometimes highly
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stirring life story, it is within the interplay of individuality and collectivity that genetic
testing deploys its meaning. This is why we will, secondly, identify three main layers of
collectivity that matter: the family at genetic risk, the hybrid collective of profes-
sionals and affected and an expanding form of biosociality that links individual ex-
periences to societal discussions and value structures. Looking at these moments of
articulation between individuality and collectivity in a specific cultural/technopolitical
context will then lead us to reflect on the term (id)entity. It should express the fact that
processes of identity (trans)formation always also involve being transformed into enti-
ties within the above mentioned collective structures. While doing so we should keep
in mind Stars (1991) observation that once a network in our case a collective is in
place, even those who position themselves outside have to live with the fact of its ex-
istence. Thus each of these collectivizing moments contributes to reconfiguring what
being tested actually means, opens up certain possibilities while closing down others,
and allows for the uptake of certain identities while making others more difficult to
adopt. All three layers of collectivity together create a specific blend of modes of or-
dering that gain power in the confrontation with issues of health and illness in the age
of genetic medicine in the Austrian context.
1. Individuals entering the realm of genetic testing
When asking our interviewees to reflect on their getting in touch with genetic
testing for HBOC we collected a broad variety of stories. Some had been approached
by a member of the counselling centre when a close relative was dying of breast can-
cer, others had already fallen ill and learned about the possibility of genetic testing
during treatment, yet again others had actively sought genetic testing or had crossed
one of the rare newspaper articles which made them think about this new possibility.
Yet despite their difference, what all stories had in common was the fact that genetic
testing for HBOC was perceived as largely unknown to them before getting in touch
with the counselling centre and that they could not refer to any public discourse to
make sense of their situation. This explains that they felt the need to tell their story as
one that was exceptional and that was linked to this location the counselling centre
and its staff in very specific ways.
Furthermore all accounts had in common that none of the interviewees seemed
to engage in accumulating expert knowledge about the test or about the genetics
behind it. They rarely if at all referred to it. Even when asked about the test and what it
meant to them, they reduced it to a black-boxed passage point, to a kind of inscription
device that produced visible information about their invisible genetic constitution. If
questioned further they would simply associate the test with an ordinary blood test;
they would neither ponder the validity or accuracy of the results, nor the epistemic
difficulties they might have encountered in the counselling situation, nor the fact that
they had to wait for minimum a year to get first results.
In our interviews two dominant groups of accounts appear about the reason for
getting tested. First, a considerable number of interview partners had the pre-test ex-
pectation that engaging in genetic testing would allow them to access a clear-cut
problem/solution package: testing procedure and preventive measures. Knowledge
without an option for subsequent action seemed useless to them. This strong desire
for immediate action could be explained in a two-fold way: On the one hand we could


12
read it through their life and family histories characterized by experiences of illness
and death of loved ones and fear of suffering the same fate. Hence, the aim of genetic
testing is not in the first place to gain knowledge but to find means for making ones
potential fate escapable. On the other hand, we could argue that such a vision is part
of a much wider culturally entrenched narrative that links biomedical knowledge to
the paradigm of prevention as the only rational form of action to be taken by a re-
sponsible citizen-patient. In fact even without having been in touch with a counselling
centre, participants in the focus groups on genetic testing both affected and non-
affected also shared the view that knowledge is only useful if action is made pos-
sible. (Felt et al. 2008) Without possible action, knowledge is perceived as endangering
the subject and increasing his/her fragility.
To a second subset of interview partners their at-risk status seemed all too obvi-
ous before testing. A history of benign breast tissue abnormalities, a resemblance to a
deceased relative or a reoccurring pain in the breast might account for such a strong
conviction that one is at risk. Yes I [had] somehow this feeling, one young woman
(P3) explained, that there is something. In particular I felt constant pain in my breasts,
indeed precisely at the spot where my mother also had had her pain. In such cases,
the meaning of the test is again a slightly different one: the test becomes a means of
validating pre-held knowledge and hence it becomes a very different kind of passage
point for them Although they are pretty sure that they are at risk, this kind of per-
sonal knowledge is perceived to be neither acknowledged by society, friends or em-
ployers, nor by the medical system as a basis for enhanced preventive care or prevent-
ive surgery. Hence, while they only hold little hope that a negative test result will re-
lieve them of fear, they do know that a positive test result will allow them to engage in
preventive action legitimately. A very young woman, who has been seeking intensified
care for years based on the strong feeling that she was a risk
3
expressed this very ex-
plicitly:
It is somehow the only chance that one has access to these diagnostic tools. Because
otherwise you are not taken seriously anyway, and its not possible to have it
checked out to see if it is alright. (P3)
Hence, most interviewees in our setting clearly related testing to the chance of
taking action. Indeed, genetic knowledge meant for most of them in this context ac-
cess to advanced technologies of biomedical prevention and to specifically skilled
medical experts. This intertwindness of genetic knowledge and preventive options is
at the heart of both groups of narratives about deciding for genetic testing that we
encountered: Rather than the hope of being tested negatively and being relieved of all
fears, it is the positive connotation given to the ensemble of genetic knowledge and
biomedical preventive action that seems to be the core incentive for undergoing test-
ing.
What we observed so far already hints at the significant role that is attributed to
becoming part of specific setting where it is rather the role of the medical experts to
hold detailed knowledge about genetics, whereas other roles are attributed to the
tested developing personal coping strategies, for example. This observation would

3
Her feeling was confirmed by the test and at the time of the interview she had already undergone
mastectomy.
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fall into the category ignorance and the division of labour (Michael 1996: 118),
stressing that non-engagement with scientific information might be understood as
deliberate choice rather than a deficiency. Hence, the degree to which counselees
engage with genetic knowledge cant be interpreted as a mere lack of willingness or
capacities to do so, but it must be understood as the result of an intuitive understand-
ing of the institutional and interpersonal settings this genetic knowledge is embedded
in, as well as of the social hierarchies and dependences they themselves are moving
into. This understanding is potentially reinforced by first, a pre-existing strong hier-
archy between medical professionals and patients in the Austrian context and second,
by the fact that there is hardly any broader cultural model for collectives of patients
having their own authoritative voice, e.g. through organised self-help groups.
Yet even though the latter is the case, we will show in what follows how the
counselees get involved into multiple forms of collectives and how that impacts how
they deal with their genetic predisposition.
2. becoming part of collectives
The family at genetic risk
In the specific setting of our counselling centre, individuals seeking genetic
counselling need to have a distinct family history of breast and ovarian cancer show-
ing a pattern of cases that indicates a possible hereditary predisposition in order to be
admitted for testing.
4
Hence, thorough investigation of ones family history is the first
obligatory step into genetic testing, strongly emphasising the relational character of
genetic knowledge. From the beginning it is performed as knowledge not only about
the person tested, but also about her/his genetic kinship, enforcing a framing of the
individual as the family patient (Bourret, 2005). As a representative of a familial col-
lective, the family patient is materialized in the risk-based, genetically grounded con-
struction of the medical pedigree, which will allow him/her access to the system. A
pedigree combines different sorts of data (e.g. oral family history, medical records and
test results) and translates them into a formalized representation. Individual family
members become literally translated into biomedical entities represented through
specific icons on the pedigree chart indicating both genetic and health status. Family
structures are thus rewritten, generating a new and potentially unfamiliar vision of
family whose members are not necessarily connected any longer through social
bonds and collective memories, but through genetic kinship and a potentially shared
genetic risk. This version of family is hence rarely congruent with the counselees vi-
sion of her/his family. It might exclude some that are socially near (e.g. step-siblings)
while it includes unknown or distant relatives, with whom they share a risk of risk but
not much more than that; some family branches appear affected while others seem to
be spared and thus are rendered invisible within this new genetic family at risk.
When asking our interview partners to tell us about their first encounter with
genetic testing for HBOC, this reconstruction of familial bonds becomes clearly visible,
as most narratives start by a reference to ones place in such a reconstructed family:

4
For the detailed criteria, see http://www.meduniwien.ac.at/brustCC/index.php?id=11#a5.


14
My mother fell ill with breast cancer in 94 [] and in 99 she died of it. [] We were
offered, my sister and I, genetic testing, so that we could find out whether we were
having that carrier or not. [] There was my mothers sister, but I dont know for
sure whether it was ovarian cancer. [] And what I know is the grandmother of my
mother had it, too, by genealogical research they somehow found out that the
grandmother of my mother had exactly that gene, too. (P4)
In their stories, the interviewees are hardly ever the sole narrative centre, but
more often we meet selves in relation (Hallowell 1999). Again, in the Austrian context
this is not surprising as every person wanting to get tested needs to bring their rela-
tives to the genetic testing at least virtually. It is out of these relations, out of the
place one takes up as a biomedical entity in this familial pedigree that potential identi-
ties start to arise that will be further negotiated within other collective spheres of ge-
netic testing.
Through these reconfiguring of family relations, new kinds of responsibilities
emerge, concerning obtaining and disseminating knowledge about ones genetic sta-
tus and engaging in personal risk-management or persuading others to do so. Each of
these responsibilities has an individual as well as multiple collective dimension, e.g.
engaging in personal risk management by attending regular preventive checks was
framed by our interviewees as both a way of handling their own fear of falling ill and as
fulfilling their responsibility towards their family and especially their children to stay
healthy, in order to spare them the pain of a deceased mother, but also towards soci-
ety to keep treatment costs low. Or while another interviewee would acknowledge the
importance of having the right to not wanting to know about a genetic predisposition,
he nevertheless informed a relative to whom he had not spoken in years about his
potential genetic disposition. Thus he did not only see his relatives as belonging to the
same genetic family but also assumed that they would quasi-automatically become
part of the same thought collective: he conceptualised them as being ready to know
about their genetic risk and to engage in prevention. This feeling was reinforced by
the fact that the rationale for gaining knowledge and acting on it seemed to fit per-
fectly well into the Austrian context: with work environments and an insurance sector
perceived by the interviewees with rare exceptions as non-discriminatory, our inter-
viewees found no rational argument for not wanting to buy into that system.
It is frequently argued that the ways individuals feel and engage with these re-
sponsibilities is highly gendered:5 Womens own risk management choices concerning
HBOC are often framed by gendered concepts of taking responsibility and caring for
others. Likewise, our female interview partners frequently alluded to the fact that their
male relatives did not take genetic risk and risk management sufficiently serious and
for example refused to get tested; they explained this behaviour mainly by the fact
that men were largely not at risk personally and thus avoid engaging with their ge-
netic predisposition. The hypothesis that direct affectedness plays a central role is
supported also by the account we got from one of our two male interviewees, who
had by the time of the interview been already operated twice for breast cancer:
Its the genetic guilt, yes. I mean I do not blame my ancestors, its not their fault, and
my son doesnt say: Hey, I got this thing from you! either I believe he doesnt even

5
E.g. Hallowell, 1999, Hallowell et al., 2005 and 2006, d'Agincourt-Canning, 2001.
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15
think like that but if you would ask me, I would not father a child anymore now. I
would not father a child if there is this 50% probability that it might get that. In order
not to be the guilty one, if he does get it. (P8)
Although this is a single case, it might be interesting to dig deeper in the ques-
tion how affectedness gets blended with gender and how it might have an impact on
male risk perception and the way they perform being part of a genetic family.
Finally, it seems interesting to point at the fact that through the strong framing
of HBOC as a family issue right from the start; genetic risk constituted a burden felt on
an individual and a collective level for virtually all interview partners, including the
non-carriers. Affectedness thus becomes a complex and multi-facetted category: it
applies to individuals as well as to collectives, it comes in different forms and sizes; it
can mean to be a mutation carrier, but it can also mean to be the one sibling of three
that is not carrying a mutation, a situation often associated with survivors guilt
(Brdart et al., 1998, Smith et al., 1999).
The Hybrid Collective
Genetic testing not only reconstructs the family collective, but also gives access
to a so-called hybrid collective (Rabeharisoa and Callon 1998, Rabeharisoa 2003)
between people affected by a family history of HBOC, medical professionals and a
number of advanced technologies. All of them are joined in a common endeavour: to
identify BRCA-mutation-carriers and decrease the number of them dying, mostly by
biomedical means. While fighting death and disease could be considered part and
parcel of the medical profession, the often long lasting and dense relations created
between affected people and professionals resonate in a high amount of personal
motivation on the side of the professionals. For example, one of the medical profes-
sionals stated publicly that the most important thing for her was not to have to attend
any counselees funeral. This personal involvement might account for the equally per-
sonal character of the way a significant numbers of affected people relate to the pro-
fessionals and how they frame their relation: though there is no official organisation,
no self-help or patient group, there is a certain collective of lay and professionals they
feel part of, some more intensely, some less. The quote given below is part of an inter-
view with an elderly woman, who was the first of her family to get tested and the first
in Austria to be tested positive. To date, most of her extended family has been tested,
with a high numbers of females identified positive. Closing her story on how she hap-
pened to undergo genetic testing, she says:
And thats how we came here. Today we could not imagine that we are not part of
this. I had a lump several times, I was never scared, because I knew, there is someone
I can turn to, someone we know. When you are ill, that means so much. (P2)
This quote brings both collectives together: the familial we and the hybrid col-
lective this family has become part of. Within this collective structure, medical profes-
sionals and affected people play quite different roles; roles mostly consistent with the
classical lay/expert divide, where only the medical professionals are framed as possess-
ing key scientific knowledge, while the lay people are considered to need their advice.
However, to a certain degree it is also the lay persons experiential knowledge that is
taken into account regarding medical decisions. This openness to engage with more


16
intimate forms of knowledge is of great importance to some of our interviewees: they
need to know that their specific life and family history will be taken seriously, and will
be taken into account when it comes to preventive options. For example, although
there are no clinical studies yet available on why some families tend to show rather
early onset of HBOC, they know that the medical professionals will take a family history
of early onset into account and might advise them earlier than others to undergo
more intensive check-ups or might even suggest preventive surgery. This is perceived
to constitute a significant difference from the rest of the medical system. This is how a
woman in her early twenties depicted her experiences with local gynaecologists
shortly after her mothers early death from breast cancer:
They laughed at me. One asked me if there was Diabetes in the family, the other
looked at my breast and laughed at me. And a third said: Well, we dont need to ex-
aggerate, right? You are still young. (P3)
This hints at the most important aspect of the hybrid collective: it constitutes a
place where life experiences of HBOC family members are perceived to be taken seri-
ously. Moreover, the social and psychological consequences of such experiences and
of a potential testing experience are taken into account and are given room. This
happens in various ways: on the one hand, it is possible to hold private talks with the
doctors and psychologists. On the other hand, there are also more collectivized forms
of engaging with the different aspects of hereditary disease, such as so called infor-
mation evenings, that address specific topics, but also open up a forum for broader
discussions. These events are used in multiple ways: some come to pose questions;
some rather come to show the medical professionals their commitment to the cause;
some want to see how others deal with it (P3); some bring relatives they want to
persuade to take the test or specific preventive action counting on the convincing
character of the collective performance; in one case a woman brought her husband
along as he wasnt convinced of her wish to undergo mastectomy.
However, while the hybrid collective indeed opens up a forum for discussion,
there is simultaneously an implicitly highly normative undertone to it. Consistent with
the idea of a standardized package (Fujimura, 1992), solutions to the problem HBOC
are negotiated mainly in techno-scientific terms, rendering other forms of agency ra-
ther unfit. The non-hidden agenda of the medical professionals is to encourage indi-
viduals to make use of biomedical forms of prevention. Once positively tested the
coping strategies are envisioned as either engaging in an early diagnostics routine
specifically designed for BRCA-mutation-carriers or in deciding for prophylactic re-
moval of breasts and/or ovaries. Moreover, the centre offers psychological support
services. Yet they are aware as one of the psychologists said quite explicitly that
they already had a pre-selection and that individuals who were sceptical or rejected
this approach would not end up in the centre. Thus, though the hybrid collective
opens up a sphere of discussion, it does so in an exclusive and excluding way. It gives
room and voice only to a specific way of dealing with a HBOC. This leads to an interest-
ing twist: While there is an unusual amount of flexibility and adaptability within the
biomedical services offered, voices vouching for non-biomedical ways of dealing tend
to be relatively (self)excluded. These observations seem to fit in a broader picture of
how self-help movements are largely organised in the Austrian context: they are often
run by medical professionals active in the respective field and rarely conceptualised as
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17
a setting in which collectively validated forms of counter-expertise can emerge, take
shape and develop momentum. From that background we can understand why the
specific orderings taking place are not questioned by any of the present counselees
or at least not in any explicitly visible form.
Rather, attendants of the information evenings seemed to be in line with the
medical professionals; discussion centred frequently on those absent relatives who
dissented. Frequently, psychologists and medical professionals used narratives about
maturation to calm those worried about their dissident family members: a time will
come when they will turn to biomedical help, probably triggered by some change in
their lives, such a fathering or mothering a child. This narrative of maturation implicitly
depicts deciding for genetic testing/biomedical prevention as the responsible and
rational choice, while other choices are rendered immature and irrational. Moreover,
while it is frequently stressed that each and everyone must chose for him/herself for or
against the test, relatives are also encourage to express their worries and to try to sug-
gest to potentially at risk relatives that they decide for testing and biomedical forms of
prevention, which is something the medical personnel themselves cannot do. Hence
the emerging hybrid collective has a very specific architecture of aims, values, and
practices. So the question arises: How do members of this community relate their deci-
sions, their knowledge and their actions to the larger societal context?
Expanding Biosociality
We will now outline a number of expansion processes through which our inter-
view partners relate being part of this specific and novel form of biosociality to their
broader societal context. We will focus on three forms of expansion. The first one is a
temporal expansion that is rooted in a specific construction of the future propagated
within the hybrid collective. Especially to young women who tested positive, the fu-
ture is filled with questions, one of them being: Is it okay if I still have children? Or
should I eradicate the gene with me (P4)? However, there is a specific scenario cre-
ated within the hybrid collective that aims at resolving that burden:
And then they told me, well, that [the mutation] should not be such a handicap now
that I abandon my family planning just because of that. Because in twenty years the
medicine will be that far advanced that they will be able to basically take that [the
mutation] away. (P4)
While the exchange this interview partner refers to took place in a personal con-
sultation, we could also observe that during information events concerns about pass-
ing on genetic risk were dismissed by the professionals by referring to that vision a
possible future cure. However, this vision grounds on the assumption that these future
children will be equally willing to obtain genetic knowledge and adhere to biomedical
solutions as their parents are right now. Hence there is a twofold expansion: one that
concerns medicine and its capabilities, and a second that concerns the future mem-
bers of the family that become while still unborn inscribed into a specific biomedi-
cal paradigm.
This first expansion is strongly linked to a specific vision of progress that is
equated with techno-scientific developments and that has a long history in the medi-
cal domain in Austria context: steady advancement will also lead to gradual reframing


18
of many if not all diseases into genetic terms. Having a genetic disease is thus normal;
the difference between a BRCA-mutation-carrier and any person in society is thus not
that one is genetically affected and the other is not; the difference, so the argument
goes, is that the established BRCA-mutation-carriers knows their risk, while the others
dont (yet).
This idea lies at the heart of the second form of rhetorically expansion: the uni-
versality of genetic risk. A frequently used example in that vein both by medical pro-
fessionals and affected people is that of the gene for heart attack, while other exam-
ples include prostate cancer, vein disease and astigmatism:
Now we have that, and now we just say, others have the gene for heart attacks and
we just have that breast cancer gene. And even if, we can do something against it.
And in good hands, we say, we are as well. (P2)
Such accounts argue for omnipresent genetic risks and hence a sort of universal
genetic affectedness that reintegrates the experience of genetic risk of HBOC into the
realm of what is considered normal. Thus it establishes an expanded target group for
the guiding principle of seeking biomedical knowledge and prevention: everyone. This
normalisation however is not considered threatening since both health insurance and
labour market arrangements still seem robust enough in the Austrian context to ac-
commodate such a vision.
This is already indicative of the third form of expansion: a rather strong convic-
tion that society at large should adapt to biomedical forms of knowledge and preven-
tion. Rendering the hybrid collective a sort of model enterprise, a number of interview
partners envision that engaging in their form of risk and responsibility management
is the way society at large should increasingly deal with health issues. As medicine
advances, rejection of its services is thereby increasingly considered irrational and irre-
sponsible:
If they offer you the chance and you are so stupid not to take it, then its your own
fault. Its everyones own fault, if they get something later on as a result of their own
carelessness. And the contributions to the health insurance, Im well aware, that they
are exhausted eventually, but then they should just make such patients pay them-
selves. (P4)
While the quote above nicely illustrates how deeply entrenched neoliberal ideas
of individual responsibility towards the community are and how the threat towards
the collective (health system) is used to enforce normative imagination of responsible
behaviour, some other interview partners instead focus their arguments on the per-
sonal and emotional costs of illness that could be lessened if more people would en-
gage in biomedical prevention. Considering themselves to be pioneers of that new
thinking and acting, a number of interview partners portrayed themselves as being
actively engaged in spreading the word. The quote below nicely illustrates the high
level of identification with the hybrid collective underlying that activist stance:
Well, I work in a rather big company. And wherever I have the opportunity we have
several projects on health there I already posted our [laughs], the brochures from
[name of hospital]. Well, I think that should be done. [] Well, I think it needs to be
propagated. (P9)
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Yet as we have already stressed earlier by following Flecks (1935) argument,
people are never only part of one thought collective and thus hold and are confronted
with multiple thought style at once. This explains why we see regularly also ruptures
and conflicts arising on at least two levels. Firstly, while being strongly confident of the
benefits of genetic testing themselves, a few of our interview partners voiced concerns
that society at large might not be that easily convinced; some feel that a lot of peo-
ple just cant relate to that [having a genetic defect and taking certain preventive ac-
tions] (P3) and hence might possibly discriminate against those who chose to be
tested.
That is just my fear, why I dont want to shout it out loud. The fear that Im perceived
as malfunctioning or not fully operational anymore. I know its not like that in-
deed, I feel much fitter than ever or than during the last ten years, but thats some-
thing I dont believe that society is capable of understanding, honestly speaking. (P1)
Thus they see the position they can take towards their genetic predisposition as
a result of a process in which they learned to deal with it in a specific way, which would
not be the case for society at large. This could be seen as related to the silence on
these issues in the public sphere in the Austrian context; there is no space yet to nego-
tiate these issues in society at large.
Secondly, the strong conviction to biomedical prevention might also trigger
intrapersonal conflicts, a number of them centred on the option of preventive breast
removal. While this is a procedure that is believed to reduce the risk of breast cancer
by 90%, it is also a drastic act that is frequently perceived to stigmatize the body and
threaten authentic womanhood, with or without surgical reconstruction of the
breast. The quote below is given by a young woman drastically committed to the
paradigm of prevention; in her mind, the logical consequence of this commitment
would be to undergo removal of the breast. However, this is not possible for her:
I mean, the amputation, I push that very far away at the moment, because I, I dont
even want to acknowledge it [the option] at all. They would have to remove the nip-
ples, too, and I cant imagine that it will look like natural breasts again. Of course,
there is this possibility, but not for me. (P4)
Throughout the interview it becomes apparent that these opposing commit-
ments cause her high levels of stress. She frequently comes back to the issue of breast
removal, attributing a certain amount of inconsistency to herself. Traces of similar in-
ner conflicts could be found in other interviews. Thus the process of extending their
biosociality beyond the safe ground of the hybrid collective also threatens its inherent
ways of coping because tested persons now have to position theses shared values as
well as forms of legitimate action within broader societal orders.
In conclusion we could thus state that the expanding biosocialities on the one
hand support the expansion and stabilisation of certain problem/solution packages
well beyond the concrete setting where they were developed and made to work. Yet
this expansion also makes the seemingly robust collective agreements more fragile,
questionable and questioned, makes broader societal orders visible and shows the
importance of considering the broader technopolitical cultures when thinking about
what genetic testing might mean in a given society.


20
Discussion and Conclusions
To start with we would like to argue that it is essential to regard neither the
biomedical entities nor the co-produced identities in genetic testing as stable phe-
nomena but rather focus on the important spatiotemporal variations that became
observable in the narratives of our interviewees. Along with these processes of doing
and undoing (id)entities, tested persons engage with their different kinds of affected-
ness emerging through genetic testing; reflect broader societal constellations into
which their new genetic understanding has to fit; and try to integrate the potentially
disturbing and disruptive meanings of being tested into their personal biographies
and their cloth of everyday living (Lambert and Rose, 1996). In that sense (id)entities
are always tentative; they can rarely be considered as stable and always demand re-
working over and over again.
Against this background five more general observations can be made based on
our analysis.
First it is relevant to look at one important absent presence (Law, 2004) in what
we have described so far. Given the specificity of the Austrian situation of genetic test-
ing for HBOC sketched in the introduction to this paper, it is remarkable that none of
our interviewees explicitly addressed this issue or stressed the of necessity of policy
change to make genetic testing of HBOC more broadly and easily accessible. There are
two possible interpretations. One could be that through the way the Austrian health
insurance system functions patients are directly confronted with financial costs of tests
or treatments only selectively. Simultaneously there is a strong national discourse of
how advanced the Austrian health system is compared to other countries and there is
the widespread idea that all patients are well taken care of. And while the idea that
differences in treatment exist is gradually expressed more openly, this discourse
nevertheless remains rather isolated and marginalised. This could explain and one of
the authors has also encountered this in another project in the medical field (Felt et al.,
2009a) why patients conceptualise medical treatment partially as receiving a favour
from the medical system and thus feel that they should show gratitude towards the
medical professionals (e.g. through obedience, through bringing gifts). The other in-
terpretation could be that they find themselves in a rather exclusive situation and are
implicitly aware that turning genetic testing into a standard procedure would defi-
nitely change their special status and potentially also the personalised care they are
receiving now. Thus silently leaving things as they are is definitely not seen as a disad-
vantage for those already part of the programme.
Second, the absence of a broader inscription of genetic testing for HBOC in the
public health system, as well as of a broader public debate, had an impact on patients
ways of dealing with genetic testing. As they could not and did not have to refer to
pre-conceptualised and somehow entrenched ideas of what genetic testing actually
meant in the Austrian socio-political context, they seemed to handle both being an
entity in biomedical ordering processes, but also the issue of their identity as a person
with a genetic predisposition, in rather tentative ways. They seemed to experiment
with different meanings of being affectede.g. through engaging with different
scenarios what the test-result might mean for the, to recontextualise them over and
over again and to project them into potential futures of biomedicine. This means that
we find traces of elements identified in the broad body of literature on the impact of
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21
genetic testing on those tested; yet these elements appear always blended and inter-
woven with more local understandings that are temporary in character and rarely get
definitively stabilised. In that sense their not being tied into standardised practices
seemed to open up certain possibilities for the tested persons, allowing them to con-
struct their own stories of pioneering a not fully established field and to convey feeling
some control over the situation. This does not mean that our interviewees did not sub-
scribe to the social orderings performed in the testing centre, but had the strong feel-
ing that it was their choice and other options were potentially open.
Thirdly, our analysis has shown how the local gets inscribed into our inter-
viewees narratives through the different forms of collectives they are and become
part of. Thus their story is always a blend of individual and collective stories, it is always
an overlap between them becoming entities in the biomedical system and them
struggling to turn them into acceptable identities they want to and can live with. That
they are part of thought collectives (Fleck, 1935) well beyond the medical system and
that they share a civic epistemology (Jasanoff, 2005) is traceable in their specific per-
formance of an Austrian version of the knowledge society narrative; in general, our
interviewees take the supremacy of scientific knowledge for granted, subscribe to the
primacy of classical experts, and use a technology-driven rationale to guide their choi-
ces. This could then be read as a cultural specificity that is also observable through
other ways of dealing with science-society issues in the Austrian context. (Felt et al.,
2008)
Fourth, the interviewees description of genetic testing showed interesting
contradictions with the debates we witnessed in the focus groups that were part of
our larger project. In those debates genetic testing was conceptualised as an opaque
technology with invisible, mainly global actors that are pushing their interests; the
usefulness for the patient was sketched as limited (Felt et al., 2008). As shown above,
our interviewees at the counselling centre where expressing a very different view.
Hechts (2001) distinction between national technologies and technologies made
national and the role this plays in the relation of technology, national identity and
choice is instructive here. While in the focus groups participants both affected and
non-affected dominantly conceptualised genetic testing as a global socio-technical
ensemble that had not fit with what they saw as being Austrian, the context of the
counselling centre somehow had managed to make genetic testing Austrian. Con-
cretely this meant that the tested persons we interviewed managed to embed genetic
testing into their broader visions of the local context they are part of, to make it consis-
tent with local value systems, and to think of it as being compatible with both their
civic epistemologies and their individual epistemology. This became possible
through the individualised approach in the counselling centre that created the feeling
that solutions were tailored to specific problem configurations, that it was genetic
testing would have to find a fit with the Austrian system and not them with the tech-
nological system, and that individual work-arounds were the adequate way of ap-
proaching the issue of genetic testing.
This leads us to a fifth broader conclusion concerning the regularly arising de-
bates on the allegedly hostile or at least highly sceptical perspective of Austrian citi-
zens on technology, the proof being the rejection of nuclear power or of green bio-
technologies. Indeed our analysis has shown the complex and multi-layered construc-


22
tion of a relation between citizen-patients and technology. Using a distinction devel-
oped by Mike Michael (1992) we would argue that the focus group participants were
speaking about genetic-testing-in-general. While they did struggle with their pro-
found uneasiness that this technology is driven by international industrial consortia,
our interviewees in the counselling centre gave us an account of genetic-testing-in-
particular and were thus speaking of a local socio-technical assemblage that did make
sense to their view. This hints at the difficulty of simply speaking about the impact of
a technology in broader terms or of abstractly conceptualising the power technolo-
gies develop in a certain context. Instead it is important to work on the diversity of
local understandings that emerge through constant rearrangements of techno-
political cultures and new technological possibilities which reflect the multiple
openings and closings of possibilities that happen in these processes.
This analysis thus left us, coming back to our first point of conclusion, with the
rather puzzling question of what it would mean for citizen-patients when genetic test-
ing for HBOC gets inscribed into the national health care system as a standard test and
whether or not it will manage to be made Austrian beyond these isolated contexts.

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