10.6092/issn.2038-3460/17411
This paper explores enactments of participation in two Swiss biobanking configurations, a cohort biobank and a general biobank. It sheds light on the role of Personalized Health endeavours, in which biobanks play a crucial role. In order to contribute to the understanding of the role of participation in biomedical research dynamics, the analysis focuses on the processes of co-production of identity and biobanks (Tupasela et al. 2015). It documents the overlaps between the population – providers of biological samples – and the public, the collective who is expected to give its opinion on issues raised by the reconfiguration of the research/healthcare interface. It shows that modalities of participation impact the potential scientific value derived from the biobank’s population, but also that the reconfiguration of the research/healthcare interface at the core of biobanking contributes to the current blooming of discourses and practices of participation. It argues that the forms of collective identity shaped through participation as population and/or public, exceed formal strategies of participatory governance and may play an even more important role in the shaping of biobanking configurations.
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Alain Kaufmann
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Tecnoscienza – Italian Journal of Science & Technology Studies
genomic research
Banking on Participation. Exploring the Co-production of Population and Public in Swiss Biobanking
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Essays
2019-01-31
2023-06-25
2019-01-31
2023-08-31
109-132
TS
Alain Kaufmann
2018
10.6092/issn.2038-3460/17411
109
University of Lausanne
2038-3460
2
genomic research
en
132
Banking on Participation. Exploring the Co-production of Population and Public in Swiss Biobanking
https://tecnoscienza.unibo.it/article/download/17411/16268
9
                                                                                       Essay
Banking on Participation:
Exploring the Co-production of Population and
Public in Swiss Biobanking
Nolwenn Bühler                             Gaia Barazzetti             Alain Kaufmann
  University of Lausanne/                     University of Lausanne   University of Lausanne
  University of Neuchâtel


     Abstract: This paper explores enactments of participation in two Swiss bi-
     obanking configurations, a cohort biobank and a general biobank. It sheds
     light on the role of Personalized Health endeavours, in which biobanks play a
     crucial role. In order to contribute to the understanding of the role of par-
     ticipation in biomedical research dynamics, the analysis focuses on the pro-
     cesses of co-production of identity and biobanks (Tupasela et al. 2015). It
     documents the overlaps between the population – providers of biological
     samples – and the public, the collective who is expected to give its opinion
     on issues raised by the reconfiguration of the research/healthcare interface.
     It shows that modalities of participation impact the potential scientific value
     derived from the biobank’s population, but also that the reconfiguration of
     the research/healthcare interface at the core of biobanking contributes to
     the current blooming of discourses and practices of participation. It argues
     that the forms of collective identity shaped through participation as popula-
     tion and/or public, exceed formal strategies of participatory governance and
     may play an even more important role in the shaping of biobanking configu-
     rations.

     Keywords: biobanks; public participation; biosociality; personalized health;
     genomic research.

     Submitted: October 17, 2017 – Accepted: July 29, 2018

     Corresponding author: Nolwenn Bühler, Science-Society Interface, Uni-
     versity of Lausanne, CH-1015 Lausanne; Laboratory for the Analysis of Social
     Processes, University of Neuchâtel – Email: nolwenn.buhler@unil.ch



1. Introduction

    “Nowadays we do not do research on patients any more, but with pa-
tients,” said the Dean of the Faculty of Medicine at a medical conference
organized by the cantonal University Hospital on the theme of clinical

TECNOSCIENZA
Italian Journal of Science & Technology Studies
9(2) pp. 109-132 - ISSN 2038-3460
www.tecnoscienza.net                                   2018
110                                                           Tecnoscienza - 9 (2)

research, which featured a local cohort study as its hallmark (Public
Event 08/06/2017). He explained this transformation by some infamous
public scandals generated by the mistreatment and exploitation of pa-
tients enrolled in medical experiments. “Now we need to hear them, to
take their voice and their families into account,” he added. In this way, he
stressed how they had impacted the patient’s status in relation to the tra-
ditional authority and paternalistic attitude of doctors, not only in clinical
settings, but also in research. No more passive subjects, taking risks for
the sake of medical progress, sometimes without their knowledge, the
new figure of the patient he alluded to was that of a well-informed re-
search participant, whose opinions and personal situation would from
now on be taken into account.
    In contrast with this ideal figure, in Switzerland, patients’ voice does
usually not appear prominently in the debates around biomedical re-
search and they are not engaged in the new forms of participatory gov-
ernance which flourish in neighbouring EU countries in the “politics of
life”, comprising controversial new biotechnologies or entities challenging
social and cultural understandings of what “life” is, such as genetic test-
ing, GMO, or human embryonic stem cells (Gottweis 2008). The country
has so far rather been characterized by the frailty of patients’ social
movements and the absence of so-called ‘public participation’ initiatives
in relation to biomedical research1. However, calls for doing “research
with patients” have recently started to be voiced in the Swiss landscape in
the specific context of “Personalized Health” (hereafter PH). Used along
with other similar terms such as “personalized medicine”, “precision
medicine” or “predictive medicine” (see, for example, Redekop and
Mladsi 2013), PH is used in Switzerland to designate the broad and rap-
idly advancing field of biomedical research and healthcare which draws
on the combined advances in the field of big data analytics and genomics.
Characterizing the move to a data-driven paradigm of biomedical re-
search and healthcare, it aims at improving prevention and treatment in-
terventions according to the personal characteristics of individuals (Mei-
er-Abt and Egli 2016). Biobanks play a crucial role in PH endeavours.
Indeed, they are sites where tissues from which genomic data are collect-
ed, analyzed, and correlated with other health-related data, are stored,
preserved and made available for researchers. Due to the need to preserve
some connection between biosamples, data and the individuals they come
from, they have raised issues debated internationally, especially around
consent, incidental findings and the return of individual research results
(Neresini and Viteritti 2014; Wadman and Hoeyer 2014: Hogle 2016;
Tupasela et al. 2017).
    While most experts in Switzerland agree that the scope of societal,
ethical and political issues raised by PH and its associated biobanking is
such that a public debate and participatory procedures would be needed,
most strategic decisions have been taken by experts and there has not
been any public controversy on the subject yet. However, at a local level,
Bühler, Barazzetti and Kaufmann                                          111
2017 marked the emergence, at a local level, of institutional demands for
“public participation” in the governance of biobanking, along with a
growing number of research projects in medical and social sciences en-
gaging with the ‘societal’ aspects of PH, as illustrated by the launch of the
“Personalized Health & Society Initiative”2 by a nonprofit foundation.
How can we explain the current emergence of demands for ‘public par-
ticipation’ and the sudden importance of lay opinion in experts’ discours-
es in the domain of PH? What kinds of factors contribute to the rapid
transformation of experts’ view of participation in biobanking, from a
relatively unproblematic act, restricted to hospital-based biomedical re-
search – providing biological samples – to a societal matter, worthy of a
wide social debate? Finally, what is participation in these emergent dis-
courses and practices and how is it shaped?
    In order to unpack the notion of participation and contribute to the
understanding of the role it plays in biomedical research dynamics, we
draw on the argument made by Tupasela et al. (2015) that biobanking
configurations and identity are co-produced, meaning that people partic-
ipating in biobanking by providing samples and/or giving their opinion,
and from which biobanks draw their legitimacy, contribute to define the
characteristics and identity of biobanks, as much as those shape the iden-
tity of the collectives that they study and/or engage with. This allows us to
understand how the collectives involved in biobanking shape their con-
figuration as much as biobanking generates new forms of collective iden-
tity or biosociality (Rabinow 2008; Gibbon and Novas 2007). In order to
understand these processes, we need first to situate them in the context of
PH endeavours in Switzerland. Our analysis will then turn to two bi-
obanking configurations and their enactments of participation: 1) a co-
hort biobank, and 2) a general biobank which are based in the same Can-
ton. Focusing on the perspective of experts engaged in PH – biobankers,
researchers and clinicians – we will show that while, in the promissory
discourses of PH advocates, all Swiss citizens might turn their daily lives
into a reservoir for data production for the stake of research, blurring in
this way the boundary between research and healthcare, in biobanking
practices, this boundary is very present. We will show how its reconfigu-
ration is entangled with how participation is framed and may both facili-
tate and hinder the production of scientific and health values resulting
from the collection, storage and use of human biological samples for bi-
omedical research.


2. Between Public and Population: Biobanks and the Co-
   construction of Identities

   While the collection, storage and use of human biological samples for
biomedical research is not new, during the last decade, biobanks have
gained political and public importance due to the crucial role they play in
112                                                          Tecnoscienza - 9 (2)

the knowledge-based bioeconomy by transforming waste tissues into val-
uable goods and a source of commercial, scientific, political and social
values (Tutton and Corrigan 2004; Mitchell and Waldby 2010; Tupasela
2011). The productivity of biological material in terms of scientific, health
and financial value has been conceptualized in terms of ‘bio-value’ to re-
fer “to the yield of both vitality and profitability produced by the bio-
technical reformulation of living processes” (Mitchell and Waldby 2010,
336). However, bio-value is not intrinsic in samples themselves and de-
pends on “the various socio-technical arrangements as well as the contin-
uous intellectual affective and technological work of human and non-
human actors” (Timmons and Vezyridis 2017, 1243).
     Needless to say, biobanks depend very fundamentally on individuals
supplying them with health-related data and biological samples – blood,
urine and tissues. The role of these bioproviders is all the more crucial
insofar as biobanks need a critical mass of data and therefore large popu-
lation sets, in order to gain statistical power, produce solid scientific
knowledge and possibly develop new treatments and prevention strate-
gies. However, people contributing to biobanking are much more than
bioproviders, as the literature exploring the political, ethical and social
interplay between biobanks and their participants has demonstrated. Two
strands of analysis can be identified. Firstly, literature documenting and
discussing the growing role and changing status of biobanking’s public in
terms of governance. The term “public” is used here to connote the “po-
litical body of people which is engaged with [it]” (Tupasela et al. 2015,
4). Secondly, literature analysing the politics of identity and community
at stake in the constitution of the population recruited for biobanking
and defined as the “collection of individuals which are studied and acted
upon scientifically and medically” (Tupasela et al. 2015, 4).
     While it is rooted in the long history of public health policy, the par-
ticipation of lay experts – citizens, patients and other stakeholders – in
the governance of science and technology took a novel turn in the EU in
1990 (Gottweiss 2008). Developed in response to the legitimacy crisis and
critique of a democratic deficit, principles of openness, dialogue and
transparency, as well as public participation strategies, have increasingly
become central issues in the governance of scientific research (Levidow
and Marris 2001). As a political and institutional response to public con-
cerns and ambivalence towards science and expertise (Tutton 2007), the-
se strategies have flourished in the last decade, particularly in relation to
genomic research and biobanking. This is due, among others, to the many
ethical, legal and social issues they raise. Specific topics have especially
been put forward, such as the management of consent, data protection,
incidental findings and the return of research results (Tutton 2004; Tut-
ton and Corrigan 2004; Gottweiss and Petersen 2008; Kaye and Stranger
2009; Solbakk et al. 2009; O’Doherty and Hawkins 2010). Increasingly
formalized and institutionalized, public participation strategies aiming at
fostering trust and allegiance among their participants, have thus become
Bühler, Barazzetti and Kaufmann                                          113
key to their success, legitimacy and long-term sustainability (Welsh and
Wynne 2013).
     The role of patients’ associations in transforming the relationship be-
tween researchers and patients or research participants towards more in-
clusive and symmetrical approaches has been widely recognized in the
context of medical research and especially in genetics (Kaufman 2004;
Rabeharisoa 2006; Epstein 2008). Inspired by these democratic forms of
scientific knowledge production, STS scholars have supported public
participation principles and strategies for opening up the possibilities of
subverting the epistemological, political and practical hierarchical divi-
sion between lay and expert knowledge and for broadening the number
of political subjects considered relevant, to be included in debates and
deliberations (Levidow and Marris 2001; Joly and Kaufmann 2008; Gas-
kell et al. 2013; Burgess 2014). However, empirical studies show that
practices are more contrasted. In the context of biobanking especially,
the ambiguity and ambivalence of public engagement strategies in repro-
ducing the same mechanisms which motivated their implementation in
the first place is highly discussed (i.e. Wynne 2007; Voss and Amelung
2016). The role they play in silencing dissident voices, and controlling
opposition groups and uninvited or “unruly public” (De Saille 2015; Hess
2015) is given particular emphasis. In addition, their legitimating role in
gaining public support without questioning the neoliberal ideology of
progress underlying the dynamics of scientific innovation has been criti-
cized (Busby 2004; MacNamara and Petersen 2008).
     In parallel, a second strand of scholarship has explored more specifi-
cally the role played by biobanking configurations, especially large na-
tional biobanks, in constituting different forms of subjective and collec-
tive identity through the constitution of their population. Biobanks often
appeal to a rhetoric of identity and to notions of ‘authentic’ or ‘indige-
nous’ anchored in a past of shared national history (Tupasela and Snell
2012; see also Kowal 2013). Genetics, which “plays an important role in
stabilizing categories of origin” (Tupasela and Tamminen 2015, 415) is
especially salient in their constitution. This contributes to defining the
collective identity of their participants in interplay with the genetic, his-
torical, social and political characteristics they are supposed to share ini-
tially, and might result in “population branding” (Tupasela 2017) or in
“racialized notions of populations” (Reardon and TallBear 2012).
     Highlighting the national characteristics of biobanking participants
might be used to promote research in a national scientific market driven
by competitiveness and technological innovation (Tupasela and Snell
2012; Tutton and Prainsack 2011; Busby and Martin 2006). As a result, it
shadows the private and international networks necessary for biomedical
research (Busby and Martin 2006; Hauskeller and Beltrame 2016) and
transforms the population contributing to the biobank’s collection into a
form of national capital and reservoir from which commercial value can
be derived (Mitchell and Waldby 2010).
114                                                           Tecnoscienza - 9 (2)

    Tupasela et al. (2015) have analyzed the construction of the popula-
tion identity in a dynamic way through their emphasis on co-construction.
This term is used to designate the processes “whereby the population
from which the biobank draws from, helps to define and characterize the
biobank”, and inversely, those through which “identification, collection
and distribution of samples and data […] give rise to the construction of
a population at the same time” (2015, 2). They argue that this co-
construction process may lead to the bio-objectification of the popula-
tion. This concept is used to refer to “the way in which life is made an ob-
ject in different settings” (Webster 2012, 3, my emphasis). Initially, it des-
ignated the biological entities that are technologically transformed, blur
boundaries, become sites of capitalization and raise ethical, legal, political
and social issues, such as Umbilical Blood Cord (UCB) (Beltrame 2014;
Brown and Wiliams 2015) or synthetic biology (Dabrock et al. 2013). In a
broader sense, it means that participation in biobanking as population
might lead to a form of reification, essentialization or financial exploita-
tion. In other words, the collective of bioproviders feeding the biobank in
data and biological samples might be reduced to a life form abstracted
from its broader, social, economic and political context.
    In contrast with the population’s collective identity constructed by bi-
obank operators and researchers, and serving above all the production of
biovalue, one can ask whether other forms of identity might emerge from
the constitution of the “public” engaged with a specific disease, patients’
rights or biobanking governance. Indeed, participation as public is sup-
posed to add social value to the pure provision of samples, and is sus-
tained by a democratic ideal, which could provide a space for the critique
of the capitalization of the biotech industry (Tutton 2004) and for alter-
native forms of reciprocity between researchers and samples donors
(Busby 2004).
    Literature on identity construction of the public recalls us that the
implementation of governance strategies might contribute to a form of
bio-objectification, as much as the identity construction of the population
does, especially when it is used to legitimate biobanking practices without
engaging in a meaningful two-way dialogue. A nagging question is wheth-
er it might also lead to new forms of collective identity that could be de-
scribed as biosociality, scientific citizenship or civic agency (Weldon
2004). The concept of biosociality initially coined by Rabinow (2008) re-
fers to collective identities forming around biomedical knowledge, biolog-
ical entities, and associated institutions (Gibbon and Novas 2007) and is
used to describe the process of identity production in active participation
from lay experts themselves. It is not possible to refer to an active form of
biosociality construction when the terms and agenda of public participa-
tion are already fixed and that lay experts have no room to influence wid-
er issues (Weldon 2004; MacNamara and Peterson 2008). However, car-
ing relationships and mutual understanding between lay experts and bi-
obanking experts might also open up some possibility for more active
Bühler, Barazzetti and Kaufmann                                           115
forms of civic engagement and practical reciprocity (Busby 2004; Weldon
2004).
    Our article contributes empirically to the exploration of these ques-
tions by focusing on the co-production dynamics of identity between bi-
obanking and its participants in the context of PH endeavours in Switzer-
land. The distinction between public, as the political body of lay people
which are consulted to give their opinion or who are engaged in the gov-
ernance of biobanks, and population, as the collective of bioproviders
from which biological samples and health-related data are taken, about
which biomedical research is done, and to which possible research results
might be returned, is analytically useful. However, we want to show that
in practice, this distinction is not so clear and is rather the object of con-
stant overlaps and shifts. In particular, we want to shed light on the over-
lap and shift between public and population in participation enactments
and show how, more than formal public participation strategies, which
are considered as time- and resource-consuming activity, the collective
identity produced through participation is valued by some experts. This
additional collective value legitimizes their research enterprise, preserve
its autonomy and provide them with the feeling of caring for their partic-
ipants, but might also open up a space for the agency of participants
which does not seem incompatible with the goals of biobanking.


3. Methods

    The data presented in this article were collected as part of a research
project commissioned by the Public Health service of Vaud Canton. It
consists of two successive parts: 1) a qualitative study investigating local
stakeholders’ views of an hospital-based biobank and the development of
personalized medicine in Vaud Canton (2014-2015); and 2) a qualitative,
empirically grounded research project exploring stakeholders’ views of
PH, focusing especially on the issues it raises for public health and on
public engagement, combined with the development of several collabora-
tive initiatives around public engagement (2017-2018). These two long-
term studies used a combination of methodologies, including semi-
structured interviews, focus groups, observations at conferences and oth-
er events associated with PH, and qualitative and quantitative surveys.
This article focuses on data collected since the beginning of 2017 on the
views of medical and scientific experts involved at various levels in the
field of PH on participation in the context of PH and biobanking, includ-
ing 10 semi-directed, transcribed, interviews with researchers, clinicians
and biobankers, and 6 with cantonal lead physicians, as well as ethno-
graphic observations taken at about 20 workshops, conferences, round
tables and meetings organized around PH, such as the Swiss Salon Pla-
nète Santé3, or events organized by the Leenaards Personalized Health
and Society initiative4.
116                                                             Tecnoscienza - 9 (2)

    The two biobanking configurations we explore in this paper were
chosen because they are emblematic of the current shift in biobanking we
can observe in Switzerland. The first illustrates biobanking based on
more traditional epidemiological research, starting to integrate genomics
and turning towards a PH approach, but not driven by it. The second one
is thought of from the outset as a tool at the service of PH research and
inscribed in a data-driven paradigm. It is not focused on specific diseases
like the first one, but collects data and biological samples for various pro-
spective research purposes. Moreover, they are situated in the same can-
ton and a similar network of actors revolve around them. While it would
be interesting and relevant to document the perspective of participants in
biobanking, this paper focuses rather the perspective of scientific and
medical experts. It explores their vision of participation in order to high-
light how the choices they make and the challenges they meet in terms of
infrastructure and organization impact on participation enactments.


4. Personalized Health Made in Switzerland

    Motivated by the potential of an ever-growing number of health-
related data – genomics and other -omics, medical, and self-tracked –
which could be exploited for the benefit of medicine and health promo-
tion thanks to advances in big data technology and analytics, several initi-
atives were recently introduced in Switzerland. The two most prominent
ones are the CHF 68 million5 “Swiss Personalized Health Network”6
(SPHN) and Health 20307, both launched in 2016. They aim at imple-
menting the infrastructure needed to use a massive amount of data for the
‘personalization’ of healthcare and to promote PH.
    Biobanks, as sites where biological samples such as blood, human tis-
sues, or DNA are stored for the use of research, have become key sites at
the core of PH transformations. In Switzerland, there is no national bi-
obank and until recently, most biobanks were of small size. Based in uni-
versity hospital services, they could be viewed as unproblematic infra-
structural tools serving specific research projects. It is only in the context
of PH developments that biobanking has gained in public visibility and
has become a political and technological instrument for the promotion of
research and innovation. In 2016, notably, the Swiss National Science
Foundation (SNSF) started funding a Swiss Biobanking Platform8 work-
ing towards the standardization of biobanking governance and practices
related to the collection, conservation and use of biosamples. Focusing on
the improvement of health strategies and the detection of diseases at a
very early stage, the financial efforts of these initiatives are justified by the
benefit for the health of the population as a whole a data-driven optimiza-
tion of healthcare is expected to bring (Meier-Abt and Egli 2016).
Bühler, Barazzetti and Kaufmann                                                 117
4.1 Personalized Health – Participative Medicine?

    The idea that tomorrow’s medicine will be not only be predictive, but
also participative, is very present in the discourse of PH advocates9. The
scope of the transformations brought by the prospect of PH is potentially
such that many societal, legal, and ethical challenges – for example data
protection, the costs of the healthcare system or the lack of public under-
standing of genomics – are identified by experts as exceeding their field
of expertise. Opening up a public debate is seen by them as a way of en-
gaging people in the PH project, and of gaining their trust and support.
“It will work better if they are active and not passive” expressed a ge-
nomic researcher and one of the PH advocates who is very committed
institutionally and scientifically, as well as vocal in the debates (Research-
er 1, workshop 20/02/2017). As a result, emerges from these discourses a
figure of an imagined “participatory subject”, that is a person from whom
responses to the multiple societal issues raised by PH are expected:

    There is no easy answer, and it depends on individuals. Everybody has
    something to say and we need to put the questions on the table from the
    very beginning, to bring them to the streets. It concerns all of us, we need
    to pass the message that YOUR ideas are important, that YOU have some-
    thing smart to say, and that people start thinking about all this (Researcher
    1, workshop 20/02/2017).

    The distinction between “public” and “population”, that is between
the collective, who is expected to give its opinion on issues raised by PH,
and the one which provides samples and data, is conflated in these dis-
courses. The participatory subject of PH is imagined as both an individu-
al who participates in PH by providing data and biological samples, and
somebody who gives its opinion and joins in the public debate, the partic-
ipation as public being supposed to increase the size of the population, in
a kind of virtuous circle based on trust and valorisation of the common
good. The importance of the common good underlying the social con-
tract at the core of participation in PH can be read in the following
quote: “When it comes to data protection, citizens have the right to be
protected, but in exchange they have the responsibility of donating their
data for the benefit of the common good” (Researcher 1, interview
20.03.2017). In order to contrast this idealized vision of a responsible and
active citizen, we now turn to two biobanking configurations in order to
document the visions and challenges of researchers and biobankers and
highlight how participation is enacted, not only in discourses, but also in
practices.
118                                                         Tecnoscienza - 9 (2)

5. Two Biobanking Configurations: The Cohort Biobank
   and the General Biobank

    The first biobanking configuration has emerged in the context of a
longitudinal, observational population study aimed at assessing the preva-
lence of cardiovascular and psychiatric disorders, and identifying their
phenotypical, molecular and genetic determinants. The biobank in this
configuration is considered as a tool at the service of the cohort study and
not as a prominent element that is publicly visible per se. The recruitment
of the cohort drew on the registers of the City Residents’ Office and a
first selection was made randomly in order to represent the population of
the city between age 35 and 78. While the project was initially funded by
a pharmaceutical company, public funding has since taken over. Over
time, the original project has expanded into a variety of sub-projects ex-
ploring the association of the disorders studied with specific related as-
pects of health, such as sleep, exercise, pollution or noise. Presenting the
study at a conference, one of the researchers at the head of the cohort ex-
plained the procedure the study participants go through. After giving
their informed consent, which is specific to the study, they undergo a se-
ries of physical tests (for example, weight and blood pressure), and re-
spond to an extensive questionnaire of over 900 questions detailing their
lifestyle, state of health, and personal history. In addition, they have a
blood sample taken and 40 biological markers are tested, in addition to
genetic markers. Blood samples and data are securely stored in the co-
hort’s biobank. The data are analysed through Genome Wide Associa-
tions10 (Researcher 2, public event 8/02/2017). Participating in this study
as a population requires thus an important “clinical labour”, defined by
Mitchell and Waldby (2010, 334) as “the regularized, embodied work
that members of the national population are expected to perform in their
role as biobank participants”. This comprises the bodily and mental ef-
forts demanded freely to participants by the various medical examina-
tions, analyses, interviews, trips and other organizational tasks necessary
to the realization of medical research.
    Opened in January 2013, the second biobanking configuration repre-
sents a first attempt, in Switzerland, at systematically collecting bio-
material and health-related data from hospital inpatients. In contrast with
the cohort biobank, which is built around a specific research project, this
general biobank emerged as a primary goal in itself, prevailing over future
PH research projects, which had yet to be defined. It was therefore not
organized around research into a specific health disorder, and a broad
consent was developed in order to address the specific needs of this hos-
pital-based cohort. Unlike the collection of data characterizing the first
biobanking configuration, very little is demanded from inpatients in
terms of clinical labour and only an additional blood sample is taken, and
stored for further biological and genomic analyses, in addition to health-
related data taken from medical files.
Bühler, Barazzetti and Kaufmann                                         119
    A special team of recruiters was created in order to inform patients
and ask for their consent to contribute to the collection of samples for the
biobank. They visited the various medical services, providing patients
with information about the biobank’s objectives and asking them to sign a
broad consent. While the hospital-based biobank was heralded with great
promise at the point of its creation (Dessibourg 2012), at the beginning of
2017, it appeared rather as a disappointing enterprise. With 25,721 pa-
tients (Bochud et al. 2017), the biobank had almost reached the symbolic
threshold of 30,000 biosamples, which was presented as its objective from
the very beginning (Nicollier 2014), but no research project had been de-
veloped to use them for a long time. It is only in 2018 that a precision
medicine unit was created at the University Hospital and that its research
team obtained funding for a project exploiting the data and samples of
the hospital-based biobank. Moreover, the role, objectives and activity of
the biobank remain unclear or even unknown to many health profession-
als who are not involved in PH developments, as well as to the general
population (Biobanker 3, interview 14/03/2017).


6. Constituting a Population: A Matter of Quantity or
   Quality?

    When we started our research, the cohort biobank was often present-
ed to us as an example of both successful research and participation in
the sense of a sustained enrolment of the population in the cohort. As the
description above indicates, participation in this study as a population
requires a significant level of clinical labour and a long-term involvement.
However, as one of the researchers of the project told us, the participa-
tion rate has remained high and participants are willing to take part in as-
sociated subprojects, even though these require them to carry potentially
invasive sleep-monitoring devices or geolocalisation trackers (Researcher
2, interview 09.02.2017). Our interlocutor explained the motivation to
participate based on two main elements. The first concerns the direct
health benefits and care participants may derive from the medical investi-
gations they undergo for research. While the medical examinations pro-
vide data, which will be analyzed and might lead subsequently to poten-
tial future clinical and preventive applications, they also provide cohort
participants with direct information about their health in the present, for
example about their blood pressure or sleep apnoea. In this way, the re-
search examinations are presented as a form of medical check-up, whose
results are shared with the people enrolled in the cohort and their general
practitioners. In addition to the somatic investigation and the direct
health value it might bring, the care relationship between the research
team and the cohort participants is also presented as a way of maintaining
the enrolment of those involved in the study over the long term. Accord-
ing to the researchers, this relationship is characterized by the way the
120                                                            Tecnoscienza - 9 (2)

participants are welcomed and the time spent in interviews. It was pre-
sented with pride as a way of giving something back for the sustained en-
gagement of the population. The fact that some people came back from
abroad especially for a subsequent phase of the project provided the evi-
dence of the success of this form of personalized care towards research
participants, the researcher added (Researcher 2, interview 09.02.2017).
The idea that the study allowed people “to learn things about themselves”
was fostered publicly by a cohort participant reinforcing the narrative of a
population receiving as much as giving (Cohort participant, public event
6/06/2017).

6.1 The City Population, the Cohort Population?

    The cohort is named after the city where the research takes place, but
also from which its participants come from, as a recruitment criteria was
that they were residents of the city. The local dimension of the cohort was
particularly highlighted by researchers: “people are proud of being a
member of the city cohort” (Researcher 2, interview 09.02.2017). Re-
searchers did not appeal to genetic relatedness or a shared past history to
characterize the identity of the cohort’s population, but rather to the city
itself. Participating in the cohort is seen by experts as acting as a good cit-
izen of the city, contributing with other residents to a collective enterprise
which surpasses their individual benefits, creating a sense of belonging
and shared identity which maintains the high and sustained level of par-
ticipation over the long term. The figure of the participant which emerges
from the researchers’ discourses is thus that of a city resident, ready to
engage in clinical labour for the future benefit of their city, and who in
return, gets an immediate benefit for their own health, care, and the grati-
fication of contributing to a collective enterprise.
    As in other genomic research biobanks, a logic of accumulation drives
the objectives of the cohort biobank. However, the principle according to
which more is best is not enacted in this configuration and the modalities
of research participation contribute to the productivity of samples, by
improving their quality: “Ideally, in research, one needs a lot of data, and
with a very good phenotype, but what made the success of the cohort, is
that we are not very big, but we have a very dense phenotype. This is our
strength” (Researcher 2, interview 09.02.2017). According to their per-
spective, the sense of community, created through the participation of the
population, plays therefore also a role in the production of scientific and
health values, by contributing to increase the quality of health-related da-
ta. In order to refine correlations and produce biomedical knowledge, the
quality of data matters more than its quantity in this configuration, and
the population’s cohort can itself be seen as a technology through which
good quality data can be cultivated. However, the restricted size of the
population is also a limitation: “The problem for us is size, i.e. statistical
power. If we focus on rare mutations or uncommon variants, when we
Bühler, Barazzetti and Kaufmann                                             121
only have 6,700 participants, we encounter a problem of statistical pow-
er” (Researcher 2, interview 09.02.2017). Therefore, the constitution of
the cohort through the administrative and geographical unit and social
image of the city constitutes both its strength and its limitation in terms of
scientific value production.
    In contrast, the general biobanking configuration does not constitute
its population through long-term participation in the study. As the re-
quired clinical labour is minimal and there is no specific disease defining
the goal of biomedical research based on the samples provided, the popu-
lation remains without a well-defined identity. Inpatients are rather
thought of as bioproviders and their potentially increasing number seen
as an asset. Indeed, this biobank is configured as a tool for biomedical
research whose potential for generating scientific and health values rests
on the greatest accumulation of data and biological samples possible. The
assumption underlying the strive for quantity is that accumulation itself is
useful for researchers by providing them with a lot of material ready to
mine and with significant statistical power. In this respect, this biobank-
ing configuration is characteristic of the data-driven paradigm of PH,
where the accumulation of data is the primary goal (Hogle 2016).

6.2 Turning Accumulation into Waste

     However, over time, critical voices among experts have pointed to the
limitations of the logic of accumulation. Accumulation was initially valued
because of its potential for producing scientific knowledge, but without
any research project exploiting these data, the value of samples dimin-
ished: “I mean, all these samples, because they do not all have their DNA,
and the buffy coat, one knows that after two or three years, or even five, it
is not that good any more. One needs to extract the DNA and then it is
stable. But it is a disaster if it takes too much time. It is a waste. […] It is
a sample cemetery, whose quality deteriorates day after day, and it is such
a shame” (Biobanker 3, interview 14.03 2017). Here, time turns accumu-
lation into waste and decreases the potential productivity of samples, if
they are unused or not transformed into a more stable or durable form,
such as DNA (Stevens 2016).
     Moving from a revolutionary innovation and tool at the service of bi-
omedical research at the moment of its creation, the hospital-based bi-
obank has, over time, reverted to being part of the invisible infrastructure
of the hospital. Its name itself has disappeared and been changed, and
turned into an appellation valorizing biological samples and data, and not
the biobank. In this way, the potential biovalue of samples and data is
spotlighted, rather than the instrument of collection and storage. If, ini-
tially, the institutional unit of the university hospital was thought of by
the researcher-biobanker team as an unproblematic reservoir for inpa-
tients, and thus for the collection of data and samples, it has proven to be
rougher than expected. Indeed, the biobank team ended up transforming
122                                                         Tecnoscienza - 9 (2)

the modalities of recruitment and had to stop using data in research in
order to face political and institutional demands to meet the standards of
the Taipei Declaration regarding the return of research results, incidental
findings, and patients’ rights (WMA 2016), and integrate them into the
governance of the biobank. In order to understand the difficulties met by
this hospital-based biobank, we need to examine how participation has
been enacted and has shifted over time.


7. Constituting a Public: Between Bioprovision and the
Production of Collective Identity

    In the cohort biobanking configuration, the boundary between re-
search and healthcare is crossed when the results of research investiga-
tions feed immediately into clinical intervention, and when the space of
research consultations becomes a place where people may feel cared for,
in the sense of listened to and taken into account, but not in regard to ge-
nomic biomarkers. Rather, it is reconfigured in a way that draws a distinc-
tion between biological results of relevance for the clinic in the present
and genetic findings tainted with the uncertainty inherent to the future of
research progress and the complexity of understanding the genome.
“Clinical and research sequencing are not the same in technical terms,”
explained our interlocutor and “we need to be very cautious about it”
(Researcher 2, interview 09/02/2017). In this biobank configuration,
maintaining a clear distinction between research and healthcare goals and
techniques works as a way of leaving the uncertainty associated with the
use of future research results in prevention and treatment, in the hands of
researchers. This also provides them with the space and time for develop-
ing research without being concerned by returning genomic results to
participants and questioning the social and ethical issues this may raise.
    Interestingly, this configuration has not involved any formal public
participation in governance so far. The cohort’s population is not part of
the governance committee of the study, is not consulted to give its opin-
ion on issues which might be relevant for them, and has not expressed
any demand for it either. In the expert’s eyes, the strength of the collec-
tive identity generated through the “personalization” of the care for the
cohort’s population, which is identified with their city, replaced the need
for a more institutionalized form of participation. This gave researchers
the feeling that they engaged with their participants and took them into
account, while enabling them to pursue their research activities without
what is considered as the time- and resource-consuming burden of formal
public participation strategies. However, due to the researchers’ appre-
hensions regarding the reconfiguration of the research-healthcare inter-
face and in order to meet the European standards for governance in bio-
medical research necessary to keep the cohort funded, a formalization of
public participation is considered in the next follow-up phase of the
Bühler, Barazzetti and Kaufmann                                          123
study (Researcher 2, interview 09/02/2017). While a rather clear temporal
and practical distinction between the two domains has been maintained
since the beginning of the study, the idealized vision of participation it
enacted is challenged by these new prospects. Indeed, the form of collec-
tive identity constituted through the cohort population’s bioprovision
seems to lose its foundation with the transformation of the research-
healthcare interface, opening up a space for the constitution of a public
whose basis and common identity are open questions for the researchers,
who are worried about how to construct it.

7.1 Providing, Donating or Advising?

    In the general biobank, political and institutional demands for formal
public participation strategies also played a role in the constitution of the
biobank’s public. During the first years of the hospital-based biobank,
participating in the biobank was understood as a safe and unproblematic
technical act – providing a blood sample taken during hospital routines –
and signing a broad consent for it to be used for further research. During
this first phase, the collection of samples was a primary goal and partici-
pation only considered as a form of bioprovision, supplying the biobank
with samples. However, in the meantime, the notion of broad consent has
started stirring controversy beyond the walls of the hospital, casting a
shadow over this form of passive participation. At stake is the impossibil-
ity of completely severing the link between the biosamples, associated
health-related data and the people they come from, in this case the inpa-
tients. In addition, the complementary possibility of returning research
genomic results and incidental findings, which might be of relevance for
the clinic, was also considered problematic (Barazzetti et al. 2017).
    In an attempt to respond to the critiques regarding the use of broad
consent, stemming from both public health experts and patients’ associa-
tions (Dessibourg 2017; Leroy 2017), bioprovision was then recast in
terms of a donation to research by the biobankers’ team. Intended to val-
orize inpatients’ participation, it indicates a shift from a technical under-
standing of participation to a moral one: “The idea is to focus on dona-
tion in the sense of solidarity, of a collective engagement for a cause: sci-
entific research, which is a marvellous thing and serves the common
good, and thus the population. Research cannot advance without dona-
tions and the goal is to sensitize the population. Perhaps they don’t know
how to contribute in general, but they can participate philanthropically in
research, they can donate their samples” (Biobanker 2, interview
28.02.2017). Turning to a rhetoric of solidarity – donation – for the pro-
motion of biomedical endeavour (Aguzzi 2017) – which from these bi-
obankers’ perspective represents a common good in itself, turns the pro-
viders of biobanking samples into an altruistic and acritical population,
sharing with the researchers the optimistic and idealistic vision of bio-
124                                                          Tecnoscienza - 9 (2)

medical research as an enterprise which is worth donating and will ulti-
mately benefit the whole society.
    This tends to erase the economical dimension of research, as well as
the exact nature of what can be given back to these participants. Instead
of providing research participants with health benefits directly in the pre-
sent, as was the case in the cohort biobank, here participants are expected
to participate in the name of the promissory future of progress in biomed-
ical research, without asking about the possible benefits biomedical re-
search might bring to them or to society. This rhetoric masks the fact that
potential clinical and preventive applications might be minor, are very
uncertain and distant in time. Instead, it points to the importance of mov-
ing beyond the individual benefits one might draw from participation in
the present, to contribute to the “common good” of research. In this way,
it places participation in a moral economy based on a social contract of
solidarity, which silences the issues raised by the reconfiguration of the
research-healthcare boundary at stake in biobanking practices when they
are put to the service of PH.
    Framing participation in terms of donation for research was meant to
address the external critiques concerning broad consent and issues raised
by the blurring of the research-healthcare boundary in an attempt to pub-
licly revalorize the biobank as an enterprise. Trying to constitute an ex-
ternal public with the idea that they could ideally be turned into the bi-
obank’s population and provide samples, through a rhetoric of donation,
the biobank’s team organized an open-door event centred around “dona-
tion for research” (Event 10/06/2018), but it remained unattended by the
general public and the cautious actors, who had encouraged the bi-
obank’s team to give greater consideration to the concerns of citizens and
patients. The difficulty the biobank team encountered when trying to
constitute a public, which was initially thought of as passive, trusting, and
donating, led to an internal reorganization of the biobank and prompted
researchers and biobankers promoting PH and who needed the biobank,
to develop more formal attempts of “public participation”. To do so, they
turned to the biobank’s bioproviders, in order to ask them about their
opinions and preferences regarding the issues broad consent and the re-
turn of results. This turned the inpatients’ population, which until then
had not been characterized or well identified, either by a specific disease
or by some genetic, cultural, socioeconomic characteristics or an adminis-
trative/geographic unit, into a public, sharing a kind of sociality, as the
enthusiastic and repeated involvement in the consultancy focus groups we
organized with the biobank team indicates.
    This public is expected to help the researchers’ team to address the
uncertainties associated with the sensitive issues raised by the circulation
of data and biomarkers and to orient future governance and practices in
response to the critiques blaming them for ignoring social, legal and ethi-
cal issues. Whereas the issues raised by the porosity of the boundary be-
tween research and healthcare opens up a space where a need to consti-
Bühler, Barazzetti and Kaufmann                                           125
tute a public emerges, which might in turn influence its reconfiguration
process, it also enables researchers to go on with their scientific activities
and to continue recruiting and enlarge the number of bioproviders. In a
way, the constitution of this public, allows them to redefine the field of
their expertise based on the technological and scientific dimensions and
responds to external critiques and political demands, while leaving to the
public the responsibility of deciding how they want data and research re-
sults to circulate between research and healthcare.


8. Conclusion

    What is participation in emerging biobanking configurations in Swit-
zerland? And how does this specific case illuminate the entanglements
between identity and participation? This question stemmed from our ob-
servations about the recent local blooming of discourses and practices of
participation in PH endeavours and the many different realities this um-
brella term conveyed. In order to tackle this question and contribute to
the understanding of the co-production dynamics of identity between bi-
obanking and its participants, we focused on two contrasted biobanking
configurations and explored the perspective of biobank operators and
researchers. One is an epidemiological longitudinal cohort biobank cen-
tred around specific phenotypes and diseases, while the other is a pro-
spective hospital-based general biobank. In both configurations, the mo-
dalities of participation determine the possibility for scientific, and ulti-
mately health, values to be produced. Our analysis of the researchers’
perspective working in the first biobank indicates that a form of collective
identity is constituted through the sustained participation of the popula-
tion and its identification to the city. According to them, the sense of
community created through the population’s participation in the cohort,
which provides the reservoir for recruitment, also serves the production
of scientific value as it contributes to increase the quality of data, neces-
sary for research. Researchers consider that the form of personalized re-
search care they provide and the sense of contributing to the common
good of their city, for the sake of the health of future generations, work as
a counter-gift for the participation of the population, in a way close the
practical reciprocity described by Busby (2004) and Wadmann and
Hoyer (2014). The second configuration, in contrast, is not focused on
specific diseases. Based on a logic of accumulation proper to a data-
driven paradigm, it aims rather at collecting the greatest number of sam-
ples and health-related data, assuming that the quantity will increase the
potential scientific productivity of samples. Its population consists of in-
patients, but has no well-defined identity and is rather initially reduced to
a bioprovision role.
    In the promissory discourses of participatory medicine advocates, the
Swiss population’s daily lives are turned into a reservoir for genomic and
126                                                           Tecnoscienza - 9 (2)

other health-related data for the sake of biomedical research, and in ex-
change for data protection. In addition, the population seems to collide
with the public, as Swiss citizens are also expected to give their opinion
on the important issues raised by biobanking in PH. These discourses
contribute in this way to shape an ideal figure of participant as morally
attuned, caring for future generations, concerned by the common good,
and engaging democratically in public debates. In other words, being a
good citizen means participating in biobanking both as a bioprovider and
as part of the public. This ideal figure is very much aligned with the need
for health-related and genomic data, solidarity and trust, necessary to the
development of PH. In contrast, in the two biobanking configurations
examined, the reconfiguration of the research/healthcare interface char-
acterizing the move to the data-driven paradigm of PH, is very much pre-
sent and at the core of shifting enactments of participation.
    In the cohort configuration, the collective identity, generated through
the population’s enrolment, works as a substitute for formal public par-
ticipation in the governance of research, allowing researchers to avoid
what they consider as a time- and resource consuming activity out of the
scope of their field of expertise, while giving them the sense of caring for
their population. However, the prospect of having to deal with issues
raised by the return of results and incidental findings, as well as the call
for participatory governance from the funders to meet EU standards,
challenge this idealized version of participation, in which researchers and
participants are apparently both satisfied by maintaining a boundary be-
tween research and healthcare leaving an open ground for the constitu-
tion of a public whose shape remains to be defined.
    In the general biobank too, the role of participants as simple biopro-
viders is challenged by the need to keep a traceable connection between
the identity of the inpatients supplying the biobank and the biological
samples for the purpose of research, but also in order to return possibly
relevant incidental findings and research results. In a first phase, biopro-
viders were requalified as donors for research, in an attempt to increase
the public legitimacy of the biobank’s activities and goals, and respond to
external critiques around broad consent. The underlying assumption was
that valorising donation would increase the mass of the population of bi-
oproviders by turning them into a passive and trusting public. However,
this altruistic rhetoric remained unable to meet the challenges raised by
the reconfiguration of the boundary between research and healthcare. It
is only through the transformation of the inpatients’ population into a
public, consulted about its opinion and preferences regarding the return
of results, that another form of collective identity as public started to take
shape.
    Does the collective identity constructed by biobankers leave room for
the agency of participants or are the public and/or population passive
collectives enrolled for the sake of biovalue production? Our analysis
shows that the constitution of a biobank public allows researchers to pur-
Bühler, Barazzetti and Kaufmann                                           127
sue their research activities by delegating the work and moral responsibil-
ity of the social and ethical implications raised by the blurring of the
boundary between research and healthcare to its public, without ques-
tioning the epistemological and political distinction underlying it. As a
consequence, while this reconfiguration generates a possibility for doing
research with patients, to go back to the Dean’s introductory expression,
opening up a space for a new kind of relationship between researchers
and the biobank’s population and public, it also seems to reinforce the
boundary and hierarchy between the technical and epistemological goals
of research left in the hands of experts and the responsibility for ethical
and social issues raised by the increased circulation of samples and data,
which is delegated to the public.
    Our analysis of the overlaps between the population of bioproviders
and the public which is engaged in participatory governance, as one re-
places or is transformed into the other, indicates also that the production
of a collective identity plays an essential role in the implementation of
formal strategies of participatory governance, and seems to be necessary
for the continuation of biomedical research, both in terms of tissue provi-
sion and in terms of increased legitimacy. In our case, this collective iden-
tity is not based on shared genetics or common past history, but is consti-
tuted through participation in biobanking, as population or as public.
The specific conflation of research and healthcare on the one hand and of
population and public on the other shapes an ideal figure of a biocitizen.
While the constitution of this figure might be used for the benefits of PH
research, we suggest, that it might also provide the participants with the
conceptual and symbolic tools and space, through which other forms of
agency and collective identity might unfold. At the present moment, in-
stead of representing a threat, it seems that some biobankers welcome
this more active form of participation, aligned with the ideal of the bio-
citizen providing samples and contributing to biobanking governance, as
long as it remains compatible with the biobanking enterprise and increase
the production of biovalue. Whether, this model will be actively appro-
priated by participants and lead to other forms of resistance, contestation
and identity remains an open question, that only future exploration of PH
in Switzerland will be able to answer.


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    1
      A notable exception is the technology assessment procedures initiated by the
federal foundation TA-swiss and involving public participation strategies such as
consensus conferences. For more information see: https://www.ta-swiss.ch/ (ac-
cessed 02/10/2018).
    2
      https://www.leenaards.ch/interdomaines/sante-personnalisee-societe (acces-
sed 29/07/18).
132                                                               Tecnoscienza - 9 (2)


   3
      https://www.planetesante.ch/salon (accessed 29/07/18).
   4
       https://www.santeperso.ch/Agenda/Bien-vieillir-au-21eme-siecle-la-sante-per-
sonnalisee-au-service-des-seniors (accessed 29/07/18).
    5
      About 70 500 000 US dollars or 60 000 000 Euros.
    6
      https://www.sphn.ch/en.html (accessed 29/07/18).
    7
      Health 2030 benefits from the burgeoning innovative high-tech health sector
situated in the Lake Geneva region of Switzerland (Genier 2017) and contributed
to the opening of the first Swiss Genome Center in May 2017. For more infor-
mation see: https://health2030.ch (accessed on 22/10/2018).
    8
      https://swissbiobanking.ch/ (accessed 29/07/18).
    9
      While experts speak of personalized health and medicine, the reference is of-
ten made to the ‘4P medicine’, which is Predictive, Preventive, Personalized and
Participatory (Auffray et al. 2010).
    10
       For more information on genome wide associations, look at https://www.
genome.gov/20019523/genomewide-association-studies-fact-sheet/ (accessed 30/
07/2018).
