10.6092/issn.2038-3460/17409
The National Institute for Health Research BioResource is not a typical biobank. It banks biological samples and other data, but also volunteer commitment to potential future research participation. Researchers can then, using the BioResource as an intermediary, invite volunteers who meet specific genotypic or phenotypic criteria to participate in studies. Using participant observation and semi-structured interviews with those involved in recruiting new and engaging existing volunteers, this paper explores how participation is understood and cultivated, and how (bio)value is produced in routine BioResource work. We contribute insights into a different configuration of biosocial participation where the engaged individual, as opposed to biological sample, is the site of value. Foregrounding the often ignored work of biobank staff, we demonstrate the iterative and reflexive way value is created and maintained through staff activity, and the different way actors make sense of the site and stability of this value.
application/pdf
2038-3460
17409
2
en
Christopher McKevitt
https://creativecommons.org/licenses/by-nc-sa/2.5/
Tecnoscienza – Italian Journal of Science & Technology Studies
health research infrastructure
Participation in the BioResource. Biobanking and Value in the Changing NHS
Text.Serial.Journal
https://tecnoscienza.unibo.it/
9
Essays
2019-01-31
2023-06-25
2019-01-31
2023-08-31
89-108
TS
Christopher McKevitt
2018
10.6092/issn.2038-3460/17409
89
King’s College London
2038-3460
2
health research infrastructure
en
108
Participation in the BioResource. Biobanking and Value in the Changing NHS
https://tecnoscienza.unibo.it/article/download/17409/16267
9
                                                                                          Essay
                                                                                                89




Participation in the BioResource
Biobanking and Value in the Changing NHS

     David Wyatt                            Jenny Cook             Christopher McKevitt
      King’s College London,              King’s College London,       King’s College London,
           London, UK                          London, UK                   London, UK



     Abstract: The National Institute for Health Research BioResource is not a
     typical biobank. It banks biological samples and other data, but also volun-
     teer commitment to potential future research participation. Researchers
     can then, using the BioResource as an intermediary, invite volunteers who
     meet specific genotypic or phenotypic criteria to participate in studies. Us-
     ing participant observation and semi-structured interviews with those in-
     volved in recruiting new and engaging existing volunteers, this paper ex-
     plores how participation is understood and cultivated, and how (bio)value
     is produced in routine BioResource work. We contribute insights into a
     different configuration of biosocial participation where the engaged individ-
     ual, as opposed to biological sample, is the site of value. Foregrounding the
     often ignored work of biobank staff, we demonstrate the iterative and re-
     flexive way value is created and maintained through staff activity, and the
     different way actors make sense of the site and stability of this value.

     Keywords: participation; biobank; biovalue; NHS; labour; health research
     infrastructure.

     Submitted: October 15, 2017 – Accepted: July 20, 2018

     Corresponding author: David Wyatt, School of Population Health &
     Environmental Sciences, King's College London, Faculty of Life Sciences &
     Medicine, London SE1 1UL. Email: david.wyatt@kcl.ac.uk




1. Introduction

           Rushing down a long, sanitised, hospital corridor on my way to a meeting,
             I hear my shoes clatter on the hard, vinyl floor. Clinical staff in their col-
              ourful uniforms and rubber shoes glide with purpose towards me while
           other bodies look lost, eyes searching the corridor for signs to direct them.
             As I move further down the chair lined passage, I encounter three mem-
            bers of hospital staff at a table, trying to make eye contact with those who


TECNOSCIENZA
Italian Journal of Science and Technology Studies
9 (2) pp. 89-108 - ISSN 2038-3460
www.tecnoscienza.net                                    2018
90                                                                 Tecnoscienza – 9 (2)

            pass by. Their table is laden with leaflets, clipboards, mugs, pens and,
            most distinctly, a large model of a double helix. A banner tells me that
         “Research Needs You.” At first glance, it appears to be a fundraising ex-
          ercise, typical of the English hospital. However, this is something differ-
          ent. As I quickly pass by the stall, an individual is sat completing a form
           while another approaches the table, asks about the double helix model
           and, for the few seconds, I hear snippets of information about genetics
           and health research. This was my first encounter with the BioResource.
                                                                       (David Wyatt)

     The BioResource, discussed in this paper, is part of wider transfor-
mations in the National Health Service of England (NHS). Since the pub-
lication of Best research for best health: A new national health strategy
(Department of Health 2006), the NHS has embarked on a process where
its focus is not only on the provision of universal health care to the popu-
lation but also on positioning itself at the forefront of medical research.
One of the ways the Department of Health pursued this vision was by es-
tablishing the National Institute for Health Research (NIHR) (Depart-
ment of Health 2006). The NIHR presents itself as “the most integrated
clinical research system in the world” and claims to “drive research from
bench to bedside for the benefit of patients and the economy”
(https://www.nihr.ac.uk/about-us/our-purpose/). It aims to do this by
funding research projects, supporting the training and development of re-
searchers, working with industry, and providing research facilities and in-
frastructures. The BioResource discussed in this paper is one of these re-
search infrastructures.
     In 2005, through a collaboration between the University of Cam-
bridge and the Medical Research Council Epidemiology Unit, a BioRe-
source was established in Cambridge. Building on this BioResource’s per-
ceived success, the NIHR funded its expansion. NIHR BioResource is
now constituted by a federation of thirteen independent BioResources
across England. These BioResources work independently and together to
streamline and support the recruitment of research participants for spe-
cific studies. BioResource staff recruit volunteers, with or without existing
health conditions, who are willing to take part in future research studies.
To join the BioResource volunteers provide biological samples containing
genetic information, lifestyle and health information and, for those with
existing health conditions, access to their clinical records. Healthcare pro-
fessionals, academics and members of the commercial pharmaceutical in-
dustry can then apply to the BioResource to identify volunteers that meet
specific genotypic and/or phenotypic criteria and invite them to take part
in new studies. The details of those willing to participate in the specific
study are then passed to the researcher to contact directly.
     David’s initial exposure to the BioResource, recounted above, affords
an insight into some of the routine practices of BioResource recruitment.
Drawing on findings from ethnographic observation of the day-to-day
work of a BioResource and semi-structured interviews with its staff, we
Wyatt et al.                                                              91
explore how BioResource participation is performed, understood and
configured. We examine the labour of running this biobank and focus on
the mundane and often invisible work involved in facilitating participa-
tion in the BioResource and the production of value. Existing accounts of
(bio)value in biobanking situate value in biological fragments (for exam-
ple, blood or tissue samples), and the potential these fragments offer for
medical innovation and research. We contend that the BioResource rep-
resents a distinct form of biosocial participation where its value is the en-
gaged volunteer (as opposed to their partible samples and associated da-
ta) and this value is the product of the labour of both volunteers and Bio-
Resource staff. Value in this context is not fixed, inevitable or linked to
the market but produced and maintained through the structured activi-
ties of the BioResource and ongoing engagement of volunteers. Our ac-
count suggests existing concepts of clinical labour and biovalue are insuf-
ficient in conceptualising and encapsulating all the work involved in pro-
ducing value.


2. Biobank Participation, Biobank Labour and Biovalue

    In his influential study of blood donation, Titmuss (1970) examines
two different ways of developing a supply of blood for transfusions post
World War II. While the United States offered payment for blood, Tit-
muss found that in the UK a better quality and quantity of blood was
achieved through a system of donating for no financial reward. Titmuss
claims this is a gift relationship and the act of giving blood contributes to
the social good and creates ties between individuals, establishing commu-
nities. Titmuss’ account infers a hierarchy of participation, with gift dona-
tion held firmly aloft of commodity purchase. Others have highlighted
that the divide between gift and commodity is neither static nor mutually
exclusive (Frow 1997; Harris et al. 2013; Lipworth et al. 2011; Waldby
and Mitchell 2006) and have questioned the compatibility between Tit-
muss’ ‘gift’ and Mauss’ account of gift exchange (Tutton 2002), Yet, Tit-
muss’ work remains important today, providing a compelling argument in
support of the welfare state (Frow 1997) and embedded in public guide-
lines, such as the UK Medical Research Council’s 2001 Human Tissue
and Biological Samples for Use in Research (Tutton 2002).
    For Titmuss, altruism was a central feature of the rationale to give
blood. While altruism dominates clinical researchers’ understandings of
participation (Adams and McKevitt 2015), in research and biobank par-
ticipation there is an acknowledgement of a more complex set of ration-
ales (Adams and McKevitt 2015; Tutton 2007). For example, in the Swe-
dish context, Hoeyer (2006) foregrounds the issues of trust in the organi-
sation and notions of fairness, (see also Cool (2016) and, in the Norwe-
gian context, Steinsbekk et al. (2013)). Hoeyer (2006, 791) reports that
some experienced participation as “taking part in a shared welfare state
92                                                               Tecnoscienza – 9 (2)

project.” In the NHS, participation in research has been framed in a simi-
lar way: healthcare is provided, and in return, citizens have a responsibil-
ity (or at least are expected) to “give back” by participating in research as
a moral duty, civic virtue, matter of citizenship (Chadwick and Berg 2001;
Mitchell 2012; Woolley et al. 2016) or even as an entitlement – patients
have a right to be aware of opportunities to participate in research (Ad-
ams and McKevitt 2015; Wienroth et al. 2018).
    Tutton’s (2007) focus group study on biobank participation adds tex-
ture to our understanding of what counts as participation and how this
term can be operationalised instrumentally by institutions. “Participa-
tion” is often used to infer a democratic process linked to notions of pub-
lic involvement or ‘active citizenship’, said to “emphasise people’s rights
(and duties) to participate in decision-making processes” (Tutton 2007,
174). Such accounts present citizens as informed, engaged and knowl-
edgeable. In practice, however, participation rarely provides space for cit-
izens to enact these qualities (Tutton 2007). Instead, it often entails the
provision of samples, the completion of forms and the ad hoc receipt of
news from the biobank about recent research. Viewing citizens as in-
formed, astute, and able to make free, rational choices is the cornerstone
of contemporary informed consent (Corrigan 2004). Yet even this is
complicated further by biobank participation, as being able to define how
data will be used in advance is not always possible (Shickle 2006; Tutton
and Prainsack 2011) and the right to withdraw is difficult to facilitate
(Melham et al. 2014).
    In the UK the most prominent biobank is the non-profit, publicly
funded charitable company, UK Biobank. Having collected samples, life-
style information and established links to the “cradle-to-grave” NHS
health records of 500,000 volunteers, it is lauded as “a major national and
international health resource” and claims that, “over many years […] will
build into a powerful resource to help scientists discover why some peo-
ple develop particular diseases and others do not” (UK Biobank n.d).
Tutton and Prainsack (2011) suggest that UK Biobank utilises a notion of
“public good” and report that it promotes a particular kind of subjectivi-
ty in its participants, that of the “altruistic self.” The altruistic self “is ad-
dressed through a discourse of communitarianism, and […] enrols in the
biobank, freely giving of themselves with no expectation of anything in
return” (Tutton and Prainsack 2011, 1090). Busby and Martin (2006)
frame participation in UK Biobank slightly differently. Rather than altru-
ism specifically, public good is operationalised in terms of British identity,
community, the benefits for the country now and for future generations.
Across both accounts, participation in research with the potential to ben-
efit the wider community is, at least in part, expected.
    The NIHR BioResource has many similarities with UK Biobank but
differs in some noteworthy respects. Whereas UK Biobank is supported
by but situated outside of the NHS and NIHR, the BioResource is fund-
ed through the NIHR and thus the NHS. While both occupy a landscape
Wyatt et al.                                                              93
where in the last twenty years the UK government has set ambitions on
utilising the life sciences industry to invigorate the economy and develop
its competitiveness on the international markets, the NHS context of the
BioResource is significant for how we understand participation. With the
publication of Best research for best health: A new national health strate-
gy (Department of Health 2006) and numerous initiatives (including es-
tablishing the NIHR), the NHS situates research and support for research
not as peripheral to its jurisdiction but embedded at the heart of its work.
Though for some time there has been an expectation that patients are
willing to participate both in defining research priorities and in health re-
search, it was only in the NIHR (2015) publication, Going the extra mile,
that participation in health research was framed not as an altruistic act
but as a patient duty. This shift to develop a “research culture” in the
routine functions of care provision (Malby and Hamer 2016) and trans-
form the NHS into a research leader, reframes the relationship between
citizen and state: universal healthcare is provided as a right (and from
taxpayers’ money), but citizens also have a duty to participate in research
and, by extension, contribute to the health of the wider population and
the wealth of the nation through the bioeconomy.
    The biobanks also differ in how they can be used for research. UK
Biobank records remain viable research data unless the individual
withdraws consent. BioResource records can only be used by
BioResource staff to identify and contact those who meet the specific
genotypic and/or phenotypic criteria required for a research study. UK
Biobank has the ability to re-contact participants too, but this is a
secondary function. For the BioResource, this is its only function. It is
dependent on volunteers enacting their supposed duty to participate in
research when invited and researchers opting to utilise the BioResource in
identifying eligible research participants.
    The specific NHS/NIHR and English socio-historical contexts fore-
ground a convergence of biotechnology and capital production in what
was previously a site of solely healthcare provision. This “implosion of
capitalism with ‘life itself’”, referred to by Sunder Rajan (2006, 171) as
biocapital, brings into focus questions about how value is created, how it
circulates and to whose benefit. We focus on the first of these points in
our analysis, exploring how BioResource value is constructed, understood
and reinforced in the practices of BioResource staff.
    To understand value, we first draw on Waldby’s concept of biovalue
to emphasise the potential offered by the collection and use of biological
fragments in the bioeconomy. Defined as “the yield of vitality produced
by the biotechnological reformulation of living processes” (Waldby 2002,
310), biovalue is not rooted in an inherent property of biological material.
Instead, it is realised in market exchange or in its potential to improve the
health of the population. While in this initial conception, the fragment is
divorced from the individual who donated it, in the context of biobanks,
this continued link between individual and biological sample can be an
94                                                          Tecnoscienza – 9 (2)

important part of biobank biovalue (Mitchell and Waldby 2010). For ex-
ample, access to an individual’s ongoing medical records provides more
data and context to any biological samples held and may offer a greater
potential for biomedical research.
    We believe biovalue is useful in foregrounding the often explicit
promise of biotechnology and the bioeconomy, but also in demonstrating
the process of actively producing and nurturing value that we argue takes
place through the work of BioResource staff. It is, however, limited
through its conception of biovalue as a commodity rather than an asset.
This point is stressed by Birch and Tyfield (2013) who suggest that view-
ing biovalue as a commodity forces us to see biovalue as situated in mar-
ket exchange. In market logic, increased supply should decrease value.
Viewing biovalue as an asset, Birch and Tyfield (2013) argue, allows for
tangible and intangible artefacts to have some value independent of the
market. It also allows for the accumulation of artefacts as a means of in-
creasing value.
    In our case study, this distinction is important, particularly when one
sees the emphasis some actors placed on accumulating new volunteers as
a means of increasing the size and, by extension, the perceived value of
the BioResource. As such, we avoid using Waldby’s term, biovalue, in the
following sections, adopting ‘value’ instead. The value of the BioResource
is, however, neither fixed nor consistently understood by different actors.
We argue that it is through an attention to the labour of both volunteers
and BioResource staff in rendering the BioResource of value to biomedi-
cal research that we see processes of creating and maintain value that are
both iterative and ongoing. Clinical labour, introduced by Mitchell and
Waldby (2010) and developed by Cooper and Waldby (2014), encapsu-
lates the embodied actions completed by volunteers in participating in re-
search. Ranging from allowing their blood to be drawn and used in re-
search, through to surrogacy, clinical labour foregrounds the work in-
volved in and expected of participants giving access to in vitro biology for
research and, by extension, aids in the creation of value. It does not, how-
ever, allow us to consider all of the different forms of labour involved in
value production.
    In their examination of 23andMe, Harris et al. (2013) separate the
clinical labour of providing a saliva sample and completing initial paper-
work involved in purchasing the direct to consumer genetic testing ser-
vices, from the ongoing “free labour” (Terranova 2000) involved in par-
ticipating in 23andMe’s research arm. The transfer of the genetic test data
paid for by the consumer to the research arm of 23andMe is presented as
a gift, donated by the consumer for the purposes of research. The con-
sumer is then inducted into a community of other donors and invited to
complete further acts of free labour such as the completion of online
health questionnaires, participating in online fora and taking part in re-
search studies. Entry into this research community promotes sociality and
is framed as altruism. Harris et al. (2013) argue that this distracts con-
Wyatt et al.                                                                95
sumers from the free nature of their labour in the process of generating
economic value for 23andMe.
    23andMe differs from the BioResource in some respects, particularly
as the 23andMe research database has value independent of the
additional free labour completed by the community of volunteers. Once
donated, the data obtained through genetic tests can be mined,
aggregated and used in research. Its value, although enhanced by
additional information from the community of volunteers, is not
predicated on this additional volunteer work. It does, nonetheless, help
us see clinical labour as just one form of labour at play in the production
and enhancement of value. Our study extends this point further to
highlight the limits of associating clinical labour straightforwardly with
(bio)value production, the already held samples and other data as
consistently sites of value, and the isolated (or collective) participant as an
unmediated asset. In fact, our analysis highlights how the routine work of
BioResource staff in not only accumulating new volunteers but in
maintaining an engaged cohort of willing, stratifiable volunteers for
future research is iteratively and practically accomplished in the everyday
work of the biobank and how this contributes to the BioResource’s value.
Such work includes the labour involved in the recruitment process,
negotiating recruitment sites, the maintenance of the database and on-
going engagement work. We contend that by looking at the labour
involved in the formation, recruitment, engagement and participation in
the BioResource, we are able to see a particular form of biobank where
value is not situated solely in samples or links to individuals, or in its
potential for research or market exchange, but in ongoing, biosocial
participation by the engaged volunteer. While biosocial participation here
does not neatly reflect more established kinds of groupings presented by
Novas (2006) in his work on patient groups, the BioResource does,
nonetheless, present a case where new groupings of biologically knowable
volunteers are being formed and used for knowledge production. The
BioResource is predicated on individuals acknowledging the importance
and potential of biology, in particular genetics, in health research and
believing they have a role to play in this research. However, in the case of
the BioResource, as framed above and below, there is also a duty to
participate; the BioResource produces “experimental subjects” (Sunder
Rajan 2008) from the citizenry at large. Our focus here however is on how
participation in the BioResource, along with the mundane, everyday work
of BioResource staff, facilitates value and extends our understanding of
the labours involved in this production process.


3. Methods
   The BioResource where this research took place is located in one of
the NHS Trusts in London, England, where four of the thirteen infra-
96                                                          Tecnoscienza – 9 (2)

structures are based. Data was collected over a ten-month period. Inter-
ested in the mundane work of BioResource biobanking, we spent one day
a week observing the everyday activities of the BioResource, including re-
cruitment and office work. We attended weekly team meetings, one na-
tional BioResource coordinators’ meeting and monthly management
meetings within the NHS Trust. We conducted semi-structured inter-
views with seven of the eleven individuals employed by the NHS to work
for the BioResource during the research period. Three members of staff,
including the previous BioResource Manager, and two research assistants,
left before the interviews took place. Of these three, only the manager
was replaced. The other individual, the research nurse, declined to partic-
ipate in an interview, giving no reason, but agreed to be observed. Inter-
views lasted on average 43 minutes. Despite having different roles, for ex-
ample, laboratory technician or BioResource manager, all staff were in-
volved in active recruitment. Interviews focused on their everyday work
activities including the recruitment process, interactions with current Bio-
Resource volunteers and other BioResources and the interviewee’s under-
standing of the role and function of the BioResource. These were record-
ed and transcribed verbatim. All resulting data was open-coded and ana-
lysed thematically (Miles and Huberman 1994). Codes were discussed
with and agreed by all authors. In the following sections, we explore the
everyday realities of doing BioResource work. Unless otherwise stated, we
use “BioResource” to refer to our specific BioResource research site and
not the overarching federation of thirteen locations.
    To maintain the anonymity of the research participants, pseudonyms
have been used throughout.


4. Forming the BioResource

    The BioResource was established in 2014 with the target to recruit
10,000 volunteers in a two-year period. To meet this ambitious goal, the
BioResource initially employed six members of staff - a manager, a re-
search nurse, a research assistant, an administrator, a database coordina-
tor and a laboratory technician. All staff were trained in the recruitment
process, but only the research assistants and research nurse were able to
take blood samples from volunteers. When not contributing to recruit-
ment work, the other staff supported the BioResource by processing
samples, managing data, reporting to management and organising the
everyday activities of the BioResource. During our fieldwork, staff num-
bers fluctuated due to staff attrition and the employment of additional re-
search assistants.
    Staff numbers and structures differed between the local BioResources.
This was particularly evident when we attended a National BioResource
meeting. Some had small teams but partnerships with other organisations.
Others had large teams who not only recruit for the BioResource but oth-
Wyatt et al.                                                                        97
er projects too. While the overall aim of recruiting volunteers to join the
BioResource was consistent across different BioResources, recruitment
strategies and practices were dictated by local NHS Trust managers, a
point returned to in the next section.
    Interested in the development of the BioResource at a local level, we
pursued the process of setting up the BioResource with James, the data-
base coordinator and the only member of staff who had worked at the
BioResource from its inception. His initial task was to build from scratch
the database that houses all volunteer information and draft the data pro-
cedures for staff. He was supported in this process through three monthly
meetings with other data coordinators. However, there was no common
database framework from which to start. The disconnect between nation-
al infrastructure and local practice from the very beginning, particularly
the lack of a common database, was not lost on James, especially now that
local BioResources are trying to integrate datasets, as he explained:

    We've encountered some issues. I mean, the whole purpose of the Bio-
    Resource in the first place was to have a national database. 100,000 people
    in the database [...]. The first years it was 10,000 patients [per local Bio-
    Resource], then it was going to be merged into sort of a national database.
    The issues [we]'ve been hitting are merging each local BioResource’s da-
    tabase into a national one. We haven't got there yet. We’re still working
    on it but there’s obviously lots of issues involved with data types and [get-
    ting] everybody working from the same page because there’s not a central-
    ised [system]. […] It’s not been organised from the top, it’s been very fed-
    eralised. Each BioResource is working to their own standards and things,
    so that’s been an issue where when you want to actually merge it together.
                                                  (James, Database Coordinator)

    This image of the National BioResource, developing from the bottom
up in a “federalised” way with different local database systems, contrasts
with more sophisticated biobanks like UK Biobank and 23andMe. Map-
ping fields between databases, streamlining recording and coding practic-
es are all necessary prerequisites for an integrated and efficient system.
James’ acknowledgement that the merge of records was not to take place
until the “10,000 patients” target was met infers a priority for recruiting
volunteers over other aspects of work. This is reflected in our experiences
in the field and represents an important point of disjuncture in under-
standings of the site and stability of value. We explore these themes in the
next two sections.


5. Recruiting BioResource Volunteers

    The BioResource’s initial recruitment strategy targeted outpatient
clinic attendees. BioResource staff trained clinic staff (clinical nurses and
phlebotomists) to recruit for the BioResource as part of the patient’s visit
98                                                           Tecnoscienza – 9 (2)

to the hospital. Fitting into wider imperatives to support and facilitate re-
search within the NHS, as discussed earlier, the BioResource attempted
to situate itself within such a narrative where recruitment activity is part
of routine hospital work. With the paperwork completed and blood or
saliva samples obtained by clinic staff, the BioResource team would then
process this information. This approach to recruitment, however, proved
difficult. An unpublished BioResource report on barriers to recruitment
stated that clinical staff did “not recognise [BioResource recruitment] as
part of their routine duties”, despite the national drive for research and
this project taking place in a research-intensive hospital. This report also
stressed that clinical staff see “no evidence of benefits for their careers”
by contributing to BioResource recruitment work and that the “relevant
managers/Principal Investigators do not ensure recruitment is happen-
ing.” Equally pressing were the “staffing issues and busy clinical work-
load” that prevent the undertaking of additional work. These barriers
were reflected in informal conversations with the BioResource staff.
Completing recruitment in this way not only relied on clinic attendees be-
ing receptive and willing to join the BioResource, but on clinical staff see-
ing research work as a crucial and routine part of their everyday work.
This account speaks to a broader disconnect between the stretched
healthcare workloads of hospital staff and the vision of a research-led
NHS where research is embedded in everyday practice.
    With a target of recruiting 10,000 volunteers, pressure to increase Bio-
Resource volunteer numbers was high. Local hospital management meet-
ings often involved discussion of recruitment numbers and targets. Jen-
nifer, the former BioResource Manager provided some context to this fo-
cus on numbers. She explained that participant recruitment is important
in the research function of the hospital. Recruitment data is tracked and
has implications for the NHS Trust and its future NIHR funding. As
such, the accumulation of BioResource volunteers received significant at-
tention. With the limited success of recruitment in outpatient clinics, sen-
ior NHS managers suggested a more direct method - weekly stalls in pub-
lic spaces at the different hospital sites (Unpublished BioResource Re-
cruitment Strategy 2015a). Approved by the hospital Trust, and enacted
by Jennifer and her team, the adoption of this method not only asserted
the importance of research to the hospital but presented communal hos-
pital spaces as legitimate sites for research recruitment work. It trans-
ferred the responsibility and enactment of recruitment work from clini-
cians to BioResource staff and provided the BioResource with access to
those visiting the hospital, not just those attending appointments. To
support this greater focus on active recruitment work, two additional re-
search assistants were employed. Figure 1 shows recruitment data for the
BioResource. The adoption of stall-based recruitment occurred at Month
10, demonstrating the substantial increase in volunteer numbers this ap-
proach generated.
Wyatt et al.                                                                       99




                       Fig. 1 – BioResource recruitment data
               (Unpublished BioResource Recruitment Strategy 2015b).

    When our fieldwork commenced, these stalls were embedded in rou-
tine recruitment work, and staff had developed strategies to perform re-
cruitment in this public setting. Sitting in a weekly BioResource staff
meeting early in our research, we observed some of the mundane discus-
sions and decisions that take place in facilitating this type of recruitment.
They decided who would attend each of the hospital sites the following
week and on which days, the recruitment targets by site and by day, and
when couriers would be required to move blood samples to the laborato-
ry site. News was shared about the previous week’s recruitment figures
and a recent senior management meeting. At the end of this meeting, in-
terested in how the stall recruitment process works in practice, we asked
how they recruit in these public spaces. The BioResource staff’s responses
reflect David’s experience, reported in the introduction. Stressing that
they do not actively approach individuals, they explained that they use
“the stand”, “banners”, “put catchy stuff on the table” and “offer mugs”,
all to attract the attention of those on the corridor. In an interview with
Matt, a Laboratory Technician we probed further:

    Normally we would have something, I don’t know, fun maybe on our ta-
    ble. We might have a model of DNA or something and you would just
    make a remark about that maybe and try and engage them in a little bit of
    light conversation. Then introduce the thought of ‘do you want to actually
    partake in some medical research?’ I mean for people who actually go on
    the stall regularly I think it’s quite hard to be motivated and keep repeat-
    ing the same [thing]. (Matt, Laboratory Technician)
100                                                                Tecnoscienza – 9 (2)


    These stalls were set up for five hour periods with up to three Bio-
Resource staff members there at a time. Matt’s account presents an ideal
situation where the potential volunteer approaches the table and then he
can start speaking to them and introduce the BioResource. However, the
need for substantial motivation, repetition and the location in busy public
spaces, imply the difficulty of this work. The generally polite hospital visi-
tors were often either unwilling to participate or unwilling to commit to
the twenty minutes necessary to complete the relevant forms and provide
a blood sample. While this recruitment site was more fruitful than the
clinic, a good day still only resulted in ten new volunteers against their
10,000 volunteer target.
    These stands present a particular vision of participation and the Bio-
Resource. With a model of the double helix representing “science” and a
leaflet and banner both proclaiming “Research Needs You”, reminiscent
of the British 1914 wartime call to arms, “Your Country Needs You”,
participation in scientific advancement is presented as a collective, na-
tional duty. While this rhetoric is in line with Going the extra mile, men-
tioned above, it differs from the motives reported by staff through their
interactions with volunteers. They reported volunteers emphasising “giv-
ing back” to the community or to the hospital for the care they received,
having an illness themselves or having family or friends with an illness and
wanting to help future research. While altruism is a convenient frame-
work in which to understand volunteer action, as mentioned above, ra-
tionales for health research participation focusing on altruism alone over-
simplify a complex array of motives. Nonetheless, these motives, however
compelling, did not result in huge jumps towards the 10,000 volunteer
target. Furthermore, the practice of using public spaces for this recruit-
ment, such as hospital corridors raised some concerns for staff:

   I don't particularly like the stall that much because for me, personally, if I
   were walking down a corridor, and it’s a busy corridor, and somebody
   stopped me and I have to fill out information that might require disclosing
   my medical condition, I wouldn't feel comfortable doing it in an open
   space. (Claire, Research Assistant)

    Despite airing this unease, practice did not change and corridor re-
cruitment remained the main recruitment strategy. In authorising this
work to take place in the corridor at an institutional level, the push to in-
crease the number of volunteers trumps the ethical concern of privacy,
raised by Claire. Our observations of everyday work and NHS manage-
ment meetings reinforce this focus on increasing volunteer numbers.
Numerous line graphs were projected on walls and distributed in
handouts. Tables breaking down recruitment by hospital site and clinic
were discussed and unpicked. Upward trends, such as that presented in
Figure 1, were used as markers of success, milestones were celebrated
Wyatt et al.                                                            101
with cakes for the BioResource staff, from the first volunteer to the x
thousandth. This association between the accumulation of volunteers and
ideas of success was also present in numerous pieces of formal documen-
tation (Recruitment Strategies and management reports), information
presented at National BioResource meetings and in weekly team meet-
ings, where recruitment statistics and targets formed a staple component.
The focus on increasing numbers presents the value of the BioResource
and its potential to contribute to the bioeconomy as situated firmly in the
one-time clinical labour of volunteers joining the BioResource. This is an
asset to be accumulated and is the central focus of the BioResource.
    Even when acknowledging the ongoing relationship with volunteers
necessary for the BioResource to function as a broker of research partici-
pants, participation in later research is either assumed or ignored. Such
an approach is consistent with the assumption that participation in re-
search is a duty but is not reflected in the laborious process of recruiting
small numbers across extended periods of time. BioResource staff, how-
ever, acknowledged more is necessary to transform this closed repository
into a useful and valuable resource in the research process – as Claire
notes, “…even though they've said yes, you can't really do anything with
the sample unless you contact them a second time and they say it's OK.”
As Claire recognises, recruiting a volunteer to the BioResource is just the
first step in contributing to future research. Aware of the importance of
volunteers remaining open to participating in future research through the
BioResource, staff discussed the need to do something to develop and
nurture a longer-term relationship with volunteers. Looking to the origi-
nal BioResource in Cambridge as an example of success in this type of
bio-banking, the BioResource staff noted how Cambridge incorporated
engagement activity into their routine practices. With this precedent, and
staff agreement, Jennifer decided they should also complete some en-
gagement work with BioResource volunteers.


6. Engaging BioResource Volunteers

    Sat around a table scattered with pens, paper, plates of biscuits and
mugs of steaming coffee, BioResource staff discussed what they could do
to enhance and develop a relationship with BioResource volunteers. They
had many ideas - from newsletters to performance art, social media
platforms to public debates. While some ideas were already used by other
BioResources, such as social media platforms, these were not viable
options for the BioResource as they did not have the capacity to run
social media accounts and maintain their recruitment activity without
increasing staffing. This limited the type and extent of engagement
activity the Bio-Resource could commit to. They focused on on-going
engagement activities as opposed to a one-off effort. Equipped with a
small budget from the BioResource’s own funds, limited staff time and
102                                                              Tecnoscienza – 9 (2)

guided by Cambridge who also use this method, they decided to produce
a biannual newsletter for all volunteers.
    The resulting newsletter, completed over an eight-month period, went
through six substantive versions. BioResource staff sketched infographics;
decided on exact content; drafted, redrafted and edited text; calculated
postage costs; and arranged a platform to host and monitor the electronic
version of the newsletter. The content provided updates on the Bio-
Resource, details of the recruitment figures and news on the BioResource
team. The BioResource was situated in the context of the National Bio-
Resource and readers were told about the process of collecting and stor-
ing volunteer samples, data and the potential use of this data. The news-
letter also provided accounts from volunteers, describing their experienc-
es of joining the BioResource and the positive benefits of health research.
BioResource staff had hoped to include examples of how the BioResource
itself has contributed to medical research but as it was relatively recently
established this was not possible.
    The resulting newsletter did have an effect, as Helen the BioResource
Manager highlights:

 When we sent our recent newsletter out, people were keenly replying saying
 ‘you haven't contacted me yet, do you want me?’. They're so keen to be in-
 volved, which is really good when you think about it because the first lot
 were emailed out and, you're a busy person too, not everybody looks at their
 emails religiously. It’s good that people are responding positively and click-
 ing through. (Helene, BioResource Manager)

    Luke, the Database Administrator, expanded further on these interac-
tions sparked by the newsletter:

   We sent out some newsletters recently and we are getting responses back,
   so I had to reply to these people, lots of them. […] Some wanted to join
   the BioResource as well, having heard about it from family. […]
   We got some [responses] where people were very happy to receive the
   newsletters and to know that they are really contributing, assisting the Bi-
   oResource. Some wanted to know if there are studies which they can par-
   ticipate in. They were really willing. (Luke, Database Administrator)

    Luke and Helen’s accounts present an encouraging response to the
newsletter. The newsletter served to inform and generated interaction
from some volunteers. It also resulted in the recruitment of new volun-
teers through introductions from the existing cohort. Luke’s account re-
flects this positivity. Responses such as these led the BioResource to judge
the newsletter a success. This success was particularly focused on its role
in creating dialogue between the BioResource staff and volunteers. Staff
saw it as a way of reminding volunteers of the BioResource and, by exten-
sion, the need to keep contact details up to date and maintain willingness
to participate in research. The newsletter became part of an active process
Wyatt et al.                                                             103
of maintaining and nurturing the utility of the BioResource. These activi-
ties and the perceived need to sustain long-term engagement with volun-
teers present the BioResource as not constituted by the properties of the
database entries and samples, but by individuals and their labour.


7. Discussion

    We have explored how participation in the BioResource is understood
by different actors and how this relates to understandings of the site and
stability of its (bio)value. Drawing on ethnographic data we document
some of the mundane aspects of BioResource work, from recruitment ac-
tivity through to engagement, along with local and institutional drivers for
how these activities are configured. Embedded in these drivers are differ-
ent understandings of the value of the BioResource. At an institutional
level, the BioResource is understood as something with a tangible, stable
and material value; it is not contingent on further activity. Graphs plot-
ting upward trends in recruitment numbers are viewed as symbols of suc-
cess. In this conception, database entries are the asset viewed as of value
to the bioeconomy. The institutional understanding conforms to an audit
culture where success is measured within the NHS Trust and more
broadly by the NIHR through simple metrics. The need to demonstrate
consistently increasing volunteer numbers was instilled further by the
suggestion, approval and adoption of recruitment in hospital corridors
and the provision of dedicated staff for such work. These stalls also pre-
sent a visible shift in the nature of the hospital, signalling that public
spaces within this typical care site are now legitimate sites for recruitment
and research work.
    Viewing the value of the BioResource as material, the institutional un-
derstanding does little to acknowledge that volunteers have not agreed to
participate in research studies by joining the biobank. Instead, it follows
the logic pressed by the NIHR in Going the extra mile that research par-
ticipation is a duty and, thus, participation can be assumed. In this con-
figuration, it is not altruism (Titmuss 1970) or an imagined community
alone (Busby and Martin 2006), but an obligation between citizen and
state. While we did not include interviews with volunteers in our data col-
lection, the practices of recruitment and the reported volunteer motives
for participation suggest a more complex picture. The recruitment labour
of the BioResource staff does not result in large, new volunteer numbers -
on a good day, five hours spent on a recruitment stall results in just ten
new volunteers and numerous rejections. Citizens do not appear to rush
or feel compelled to participate, at a general level, to “give back”.
    Whereas at an institutional level increasing volunteer numbers is the
focus of the BioResource, its staff acknowledge the importance of also
maintaining the existing cohort’s willingness to participate and, in doing
so, draw on a more granular understanding of the BioResource as a bro-
104                                                          Tecnoscienza – 9 (2)

ker of research participants. Biosocial participation in this context is on-
going, long-term and not to be assumed. It is through our attention to the
everyday practices, and the labour involved in BioResource participation,
that this disconnect between institutional and local understandings of
value and participation is brought into stark relief. In particular, our case
study of staff demonstrates the importance of not only considering value,
but the varying ways it is assumed, produced and maintained, by different
actors. In the context of everyday practice, this occurs through the ongo-
ing labour of BioResource staff and volunteers. The activity of recruiting
new volunteers (often absent in other studies) and engagement work of
BioResource staff help to target and sustain engagement. A volunteer’s
clinical labour in joining the BioResource and their free labour (albeit less
sophisticated than that envisaged by Terranova (2000) or highlighted by
Harris et al. (2013)) in keeping contact details up to date and remaining
willing to participate in research are not taken for granted. They are nur-
tured through engagement activity and, we contend, all contribute to this
BioResource’s value as a broker of research participants, but also the val-
ue of each individual asset, a willing research volunteer. Unlike other
conceptions of value in the bioeconomy, which focus on the potential of
biological fragments and/or database entries, the BioResource staff’s la-
bour present BioResource value as best understood as situated in the on-
going biosocial participation of the willing research volunteer. This value
is not fixed, but iteratively produced through the accumulation of more
volunteers, and, significantly, through the nurturing of the existing co-
hort. The practices of the BioResource, through an attention to the eve-
ryday labour involved in running this biobank, present participation and
value production as an ongoing practical accomplishment. In doing so, it
further highlights the limits of using the concept of clinical labour alone
to conceptualise biovalue production and the process of participants giv-
ing access to their in vitro biology. While this is an important aspect of
BioResource participation, the ongoing labour of participants and Bio-
Resource staff in maintaining involvement are needed to produce value in
an ongoing way. The BioResource complicates understandings of the site
of (bio)value as the result of commodity exchange or the production of
knowledge assets. In the case of the BioResource, value resides not only
in the biological fragments and associated data held within the database,
but most significantly in the maintained willingness of these genetically
and phenotypically known individuals to engage in future research pro-
jects.
    As one example of the developing research capacity of the NHS, our
study of the BioResource and BioResource routine work highlights differ-
ent ways in which emerging research infrastructures, their value as well as
citizen participation can be envisaged and understood by actors. We pro-
vide insight into this process by focusing on labour and value production.
We have not examined how the BioResource translates its value into vary-
ing forms of capital by fulfilling its purpose of brokering willing research
Wyatt et al.                                                                  105
participants. A focus on the performance of this brokering role would
help illuminate how value circulates and for whose benefit. Although im-
portant questions for further research, these points are beyond the scope
of this paper. Our account does, however, foreground the importance of
considering the routine labour involved in running a biobank and the role
it can play in (bio)value production and expand our understanding of the
potential sites and scope of (bio)value beyond fragments, to include long
term biosocial participation of engaged volunteers.


8. Conclusions

    In this paper we have highlighted how volunteer labour, staff labour
and ongoing volunteer participation converge in the work of the Bio-
Resource and in value production. Value, in this context, is produced not
in the laboratory or situated in the partible sample of the individual, but
in the willingness of the BioResource volunteer to participate in future re-
search. We demonstrate the different ways the value of the BioResource is
understood from within the NHS, with management focused on the ac-
cumulation of biobank entries and BioResource staff working both to in-
crease volunteer numbers and maintain the engagement of existing volun-
teers in this biobanking project. We contend that BioResource draws into
relief the routine labours involved in the value production process. Clini-
cal labour and free labour may present certain aspects of this activity, but
they fall short of encapsulating the numerous decisions and negotiations
that are involved in the everyday work of maintaining (the value of) vol-
unteers. The BioResource presents an example of a biobank where value
is not fixed or predictable, but iteratively constructed through the ongo-
ing labour of volunteers and staff. In doing so, it questions the limits of
existing conceptions of value as commodity or asset and of clinical labour
as the (sole) means of value production.


Acknowledgments
    The research was supported by the National Institute for Health Research
(NIHR) Biomedical Research Centre at Guy’s and St Thomas’ NHS Foundation
Trust and King’s College London.
    We would like to thank the reviewers and editors of this Special Issue editors
for their astute comments and engagement with our article. We are also grateful
to the participants of the “Biobanks: the interdependence between forms of
biovalue creation and donor participation” panel at the 2016 Social Studies of
Science Annual Meeting in Barcelona for their comments on an earlier draft of
this article.
106                                                               Tecnoscienza – 9 (2)

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