We’re not in it for the money—lay people’s moral intuitions on commercial use of ‘their’ biobank
ABSTRACT Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems
to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial
use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally
by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should
not, as such, give rise to financial gain”. Similarly, Norwegian legislation reads: “Commercial exploitation of research participants,
human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral
intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through
the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding
the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong
to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness
were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these
intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations
which hinder commodification of the human body and promote communal benefit sharing.
KeywordsBenefit sharing–Biobanking–Commercialisation–Commodification–Focus group research–Lay perspective
- [Show abstract] [Hide abstract]
ABSTRACT: Access to human bioresources is essential to the understanding of human diseases and to the discovery of new biomarkers aimed at improving the diagnosis, prognosis, and the predictive response of patients to treatments. The use of biospecimens is strictly controlled by ethical assessment, which complies with the laws of the country. These laws regulate the partnerships between the biobanks and industrial actors. However, private-public partnerships (PPP) can be limiting for several reasons, which can hamper the discovery of new biological tests and new active molecules targeted to human diseases. The bottlenecks and roadblocks in establishing these partnerships include: poor organization of the biobank in setting up PPP, evaluation of the cost of human samples, the absence of experience on the public side in setting up contracts with industry, and the fact that public and private partners may not share the same objectives. However, it is critical, in particular for academic biobanks, to establish strong PPP to accelerate translational research for the benefits of patients, and to allow the sustainability of the biobank. The purpose of this review is to discuss the main bottlenecks and roadblocks that can hamper the establishment of PPP based on solid and trusting relationships.Archiv für Pathologische Anatomie und Physiologie und für Klinische Medicin 12/2013; · 2.56 Impact Factor
- Croatian Medical Journal 10/2013; 54(5):496-500. · 1.25 Impact Factor
- Biopreservation and Biobanking 12/2013; 11(6):397-8. · 1.50 Impact Factor
We’re not in it for the money—lay people’s moral intuitions
on commercial use of ‘their’ biobank
Kristin Solum Steinsbekk•Lars Øystein Ursin•
John-Arne Skolbekken•Berge Solberg
Published online: 26 October 2011
? The Author(s) 2011. This article is published with open access at Springerlink.com
research as a strategy to improve diagnostics, therapeutics
and prevention. It seems to be a common opinion that these
goals cannot be reached without the participation of com-
mercial actors. However, commercial use of biobanks is
considered morally problematic and the commercialisation
of human biological materials is regulated internationally
by policy documents, conventions and laws. For instance,
the Council of Europe recommends that: ‘‘Biological
materials should not, as such, give rise to financial gain’’.
Similarly, Norwegian legislation reads: ‘‘Commercial
exploitation of research participants, human biological
material and personal health data in general is prohibited’’.
Both articles represent kinds of common moral intuitions.
A problem, however, is that legislative documents are too
vague and provide room for ample speculation. Through
Great hope has been placed on biobank
the use of focus group interviews with Norwegian biobank
donors, we have tried to identify lay intuitions and morals
regarding the commercial use of biobanks. Our findings
indicate that the act of donation and the subsequent uses of
the samples belong to two different spheres. While con-
cerns around dignity and commodification were present in
the first, injustice and unfairness were our informants’
major moral concerns in the latter. Although some oppo-
sition towards commercial actors was voiced, these intu-
itions show that it is possible to render commercial use of
biobanks ethically acceptable based on frameworks and
regulations which hinder commodification of the human
body and promote communal benefit sharing.
Commercialisation ? Commodification ? Focus group
research ? Lay perspective
Benefit sharing ? Biobanking ?
Globally there are several hundred large biobanks, such as
the UKBiobank, BioBank Japan and the Norwegian HUNT
biobank which all are resources for medical research (UK
Biobank 2009; CGM Riken 2011; NTNU 2011a, b). Sub-
stantial amounts of public and non-profit research funds
have been used to build up these resources (Hall 2006;
Brice 2009; Cookson 2010; Research Council of Norway
2010; Walsh 2010). The ultimate objective of establishing
these biobanks is to produce knowledge that forms a basis
for better diagnosis, treatment and prevention of disease, as
well as firmer knowledge-based health promotion (UK
Biobank 2007). Various actors have depicted the contents
of biobanks, which are human biological material and
health-related information from hundreds of thousands of
K. S. Steinsbekk (&) ? B. Solberg
Faculty of Medicine, Department of Public Health and General
Practice, Norwegian University of Science and Technology,
NTNU, Postboks 8905, 7491 Trondheim, Norway
L. Ø. Ursin
Faculty of Humanities, Department of Philosophy, Norwegian
University of Science and Technology, NTNU, Dragvoll,
7491 Trondheim, Norway
Faculty of Social Sciences and Technology Management,
Department of Social Work and Health Science, Norwegian
University of Science and Technology, NTNU, Dragvoll,
7491 Trondheim, Norway
Med Health Care and Philos (2013) 16:151–162
participants, as ‘gold deposits’ (Hoeyer 2005; Fugelsnes
2009; Kuras 2010; Roel 2011). Kierulf (2006) even
describes biobanks as sources that can be ‘mined for dec-
ades’, but will the ‘pure gold’ shine if it does not enable
The involvement of commercial companies seems
crucial for realising the potential within biobanks to
contribute to better diagnostics and improved drugs
(Research Council of Norway 2008). Commercial com-
panies have the funds, the expertise and the experience to
take a potential product from bench to market (Policy and
On behalf of the Norwegian Ministries of Education and
Research and of Health and Care Services, The Research
Council of Norway (RCN) published a report in 2010 on
the potential commercial use of biobank resources. In this
RCN report the idea of a national company which could
facilitate commercial activities based on Norwegian bio-
bank resources is endorsed. Here HUNT Biosciences Ltd.
(HBAS) is promoted as a viable prototype for such activ-
ities (Research Council of Norway 2010). HBAS is a
Norwegian publicly owned company established in 2007
(HUNT Biosciences 2011; NTNU 2011c). It aims to
facilitate private actors’ access to the Norwegian Nord-
Trøndelag Health Study’s (HUNT) resources. HUNT is
publicly run in an academic setting. Its collection has been
gathered over the last three decades and includes a bio-
bank: the HUNT Biobank.
Aspirations of commercial use of public and non-profit
research are far from unique for the biobank sector. They
are rather a part of a general emphasis of post-academic
knowledge transfer from various research communities to
society at large. Commercial use of biological material
and health-related information, donated by individual
participants, has the potential to benefit science and sub-
sequently the public good. On the other hand, it also raises
ethically complex and challenging issues. For instance,
what type of commercial use could or should biobank
resources be used for in order to bring about substantial
societal and economic benefits? The establishment of
deCODE, the commercial, US-owned, Icelandic biobank
project, generated strong ethical controversy internation-
ally (Rose 2006). deCODE received critical attention not
only from within the expert arena of bioethics but also
from international media and scientific communities as
well (Palsson 2008).
Meanwhile, commercial utilisation of publicly or non-
profit funded biobanks, established in the public and aca-
demic arena, has not achieved the same attention. We
expect this to change, as the prospect of commercial
exploitation of large population-based biobanks is an
important issue that at present faces biobank stewards,
society and biobank participants.
Biobank commercialisation and the law
Why does commercialisation of biobanks seem to be
strictly regulated while at the same time commercial use is
a wanted development, as exemplified by the launch of
HBAS? Various legislations, including the Norwegian
legislation, prohibit the ‘‘Commercial exploitation of
research participants, human biological material and per-
sonal health information’’ (Ministry of Health and Care
Services 2008). The Council of Europe’s Convention on
Human Rights and Biomedicine (Oviedo Convention) and
its additional recommendation Rec (2006): 4 have similar
instructions (Council of Europe 1997, 2006). The bans on
the commercialisation of the human body and its parts
represent a restrictive stance and seem to be motivated by
fear of exploitation, injustice and commodification as
summed up by Schweda and Schicktanz (2009).
‘‘Though it is not always clear what commodification is
thought to imply, a morally degrading transformation from
something intrinsically human [beyond commercial usage]
to an object of ownership seems to be at stake in most
accounts’’, Hoeyer (2007, p. 327) suggests. Or as Seale
et al. (2006, p. 25) express: ‘‘Commodification is fre-
quently regarded as violating personal, social and com-
munity meanings for bodies’’. These ideas have been
highly visible in the ethical debate on the transfer of human
organs (See e.g. Andrews and Nelkin 2001; Healy 2004;
Rothman and Rothman 2006; Sharp 2009) and have
extended into the wider realm of human biological mate-
rials (See e.g. Sharp 2000; Holland 2001; Ministry of
Health and Care Services 2001; Godard et al. 2003; Irish
Council for Bioethics 2005; Thomas 2006).
The essence underpinning prohibitions against buying
and selling organs, tissue and blood is a perception of
threat to personhood, human dignity and worth. The Nor-
wegian pre-legislative official report on biobanks (Ministry
of Health and Care Services 2001, p. 69) explains that
materials drawn from an individual’s body and stored in a
biobank should be treated with the same respect and dig-
nity as the donor. While the Irish Council for Bioethics
(2005, p. 7) writes:
Commodification of human beings is a violation of
human dignity, which reduces the individual to the
status of a mere object. In order to safeguard the
dignity of research participants, biological material
should not, be bought or sold or give rise to financial
As shown, the commercial prohibitions in legislation
and guidelines do not only pertain to body parts as organs,
but include the broader term ‘human biological materials’.
Against this, as recently addressed by Lenk and Beier
(2011), it is interesting to note that some types of human
152K. S. Steinsbekk et al.
biological materials, such as breast milk, plasma and
plasma products as well as various tissues and cell lines are
already treated as commodities in the marketplace of health
and research. This raises a tension between the prohibitions
made and practises already in place. In addition, it might
render new developments either in the use of human tissue
in treatments or in medical research where commercial
actors are involved problematic.
Scepticism amongst donors?
Donor contribution is a crucial prerequisite for biobank
research and knowledge of potential donors’ views on these
issues is important. In general, public awareness of bio-
banks in Europe is low, although somewhat better in the
Nordic countries (Gaskell and Gottweis 2011). Hence,
issues concerning biobanks or biobank research are not
topics that people in general have discussed or given much
Understanding pre-articulated beliefs and intuitions on
commercial exploitation of biobanks has intrinsic value in
bioethics. In addition it will indicate whether we can
anticipate lay people’s acceptance or rejection of the
commercial use of biobanks, if this will lead to distrust in
general and reduced participation in particular.
Several scientific studies have explored public attitudes
toward biobanks and biobank activities. They report
varying degrees of scepticism towards commercial use and
for-profit organisations’ access to biobank resources
(Stegmayr and Asplund 2002; Skolbekken et al. 2005;
Hoeyer and Lyno ¨e 2006; Kettis-Lindblad et al. 2006;
Nilstun and Hermere ´n 2006; Haddow et al. 2007; Webster
et al. 2008; Trinidad et al. 2010; Nicol and Critchley 2011).
While Stegmayr and Asplund (2002) reported that Swedish
biobank donors sanctioned industrial research, others reg-
istered marked opposition from lay people against the
access of commercial companies to diagnostic or research
samples (Nilstun and Hermere ´n 2006; Tupasela et al.
2010). In a qualitative study of potential donors’ views on
the Generation Scotland Project, Haddow et al. (2007)
identified resistance towards commercial
involvement. But nuanced attitudes were voiced including
pragmatic acceptance of pharmaceutical industry involve-
ment. These studies show that there is scepticism amongst
lay persons towards commercial use of biobanks but it is
far from unanimous and the basis for this scepticism needs
In Norway commercial utilisation of biobanks has, to a
certain extent, been debated in expert arenas. The ethical
challenges related to commercial biobanking in general or
to HUNT Biosciences in particular, have not evoked public
controversy (Ursin 2010). Despite the lack of a larger
public debate earlier findings (Skolbekken et al. 2005)
indicate that the prospect of the commercialisation of
biobank research creates uneasiness amongst potential and
actual HUNT participants. This is also something the
organisers of HUNT Biosciences have been sensitive
towards and they state that they offer ‘‘a professional
interface with industry and facilitate commercial use
without compromising the interests of the donor popula-
tion’’ (HUNT Biosciences 2011).
Articulation of ethical concerns by the use of focus
Commercial utilisation of biobanks is not a clear-cut eth-
ical issue. According to the legal reasoning and the general
scepticism referred to above, ethical problems pertaining to
commodification of the human body and its parts may
induce resistance among biobank participants towards
commercial use of this resource. But it is not obvious what
is at stake and whether there is something to disagree
about. The ‘ethical problem’ here is much vaguer than, for
instance, in high-profile ethical issues like surrogacy, stem
cell research or genetic testing. Our common morality has
no clear and distinctive options or problem descriptions to
serve us but we still ‘feel’ that there is something amiss.
Our motivation for an empirical study, then, was to dig
deeper into this arena of pre-articulated beliefs and intu-
itions on the meaning of human biological material and
commercial use in biobank settings. As the philosopher
Charles Taylor (1985, p. 36) has stressed, ‘‘…articulations
are attempts to formulate what is initially inchoate, or
confused, or badly formulated … To give a certain artic-
ulation is to shape our sense of what we desire or what we
hold important in a certain way’’. We believe that focus
groups are a suitable arena where an articulation process
can take place, and where we can hopefully come closer to
what a common ‘we’ hold important.
The logic of laypersons in terms of biobank experience
is relatively unexplored. In order to learn more about their
insights or wisdom attached to vague feelings and emotions
we engaged them in focus group discussions. Following
Kass (1997) and his ‘Wisdom of repugnancy’, we sought
deliberations which could lead to a better articulation of
‘yuck-reactions’ and what is ethically at stake when bio-
banks are commercially utilised.
Methods and materials
To study lay people’s intuitions, beliefs and moral rea-
soning we conducted semi-structured focus group inter-
views (Morgan 1993). As Schweda and Schicktanz (2009,
p. 1131) describe, this strategy is ‘‘an established tool for
investigating common sense beliefs and public topoi on a
We’re not in it for the money153
general level’’. We involved lay persons from the county of
Nord-Trøndelag in Norway who, in general, are well
acquainted with the HUNT study and its large population-
based biobank through HUNT’s long history, high local
awareness and political support (NTNU 2011a).
This study was approved by the Norwegian Data Inspec-
torate via the Norwegian Social Science Data Services
(NSD) who handles the statutory data privacy requirements
in the research community in Norway.
Focus groups: participants, recruitment and group
Biobanks are not widely discussed in the public arena, and
the ethical problems are seldom clearly articulated. We
therefore strategically recruited lay people from Nord-
Trøndelag, the locus of HUNT, who we expected to be
familiar with biobank research/participation. In addition,
we involved people with varied backgrounds regarding
knowledge and/or experience of patient relationships,
commerce, academic settings and research. To achieve this
we recruited people from various districts in the county
who either belonged to a patient or an idealistic public
health association, worked at a university college or an
industrial company. This was done in order to increase the
likelihood that participants would reflect on and discuss
topics related to health, industry, politics and ethics. The
recruitment process was done via key informants. An initial
invitation letter was sent to them which they subsequently
distributed to potential participants.
We tried unsuccessfully to recruit younger people from
student groups at the three different university college
campuses in the county, but did not get sufficient response
to set up focus groups from this segment of the population.
Although our recruitment was broad and without any
requirements for previous biobank participation we ended
up with persons that had participated in HUNT either on
one or more occasions. Two of the participants had actively
withdrawn from the biobank project after their initial
Prior to the group discussion each participant received
information including some facts about the HUNT study
and the framework for HBAS (Steinsbekk et al. 2009), an
information leaflet for the HUNT 3 study (NTNU 2011d),
and a letter with a short description of the topics and
examples showing the types of questions that would be
In 2010 we ran eight focus group interviews with 45
participants. Each group discussion was held at locations
such as a community centre, local hospital, college campus
or workplace. A total of 12 men and 33 women in the age
range of 30–80 participated. Each focus group session
lasted for 2 h and was moderated by two facilitators out of
our group of four researchers. One researcher participated
in all the sessions. We used a topic guide and each subject
was introduced with the use of a power point presentation.
In order to introduce some possibly familiar ethical
challenges of commercialisation into the discussions and to
facilitate the subsequent talk about commercial use of
‘their’ biobank, we chose the topic of commercialisation of
blood and organ donations as our point of departure. See
Table 1 for an outline of the topics, how they were intro-
duced and the main questions posed. We also discussed
other topics such as trust, privacy and data protection, but
the findings from these are not reported here.
All the discussions were digitally recorded, with a
consent from each participant, and subsequently tran-
scribed into full text and anonymised. We translated
statements used in this paper to English in a manner which
reflects the actual wording used by the participants with
some adjustments to retain content where needed.
Table 1 Short outline of the data collection framing
Topics Commodification of the human body and its partsCommercial utilisation of biobanks
HeadingsThe market and the human body HUNT in use
Introduced by Illustrations:
Venepuncture and blood collection
Logo for organ donation
Information about HUNT Biosciences’
framework were read together
Structured description of three different
potential commercial HBAS projects were handed out
Initial questionWhat is your opinion on the possibilities of
making money on human biological material?
What are your opinions on these proposed
Follow up keys
Acceptable/not acceptable practices
Limits and challenges
Reasoning for their views and reactions
Articulating how the issue should/could be handled
154K. S. Steinsbekk et al.
Coding and analysis
We analysed the interviews in an inductive manner in
search of themes. The process was informed by System-
atic Text Condensation, which was inspired by Giorgis
and modified by Malterud (2003). In addition, insights
from Krueger (1998) on analysing focus group materials
with an emphasis on thematic analysis were used.
According to Haimes (2002, p. 99), these ‘‘could be seen
as providing descriptive ‘facts’ to go alongside normative
Each member of the research team read the transcripts
and we identified and discussed the emergent themes. The
transcripts were revisited several times and the analysis led
to condensations of ethically relevant themes into concepts
which are presented and discussed in this paper.
In this part we present and comment on our findings while
a broader in-depth analysis and discussion is given in the
next part. As presented below, two distinctly different sets
of moral concerns emerged from our focus groups.
Selling oneself is morally problematic
When entering the discussion of ‘The market and the
human body’ our discussants immediately drew upon
issues of commodification of the human body and its parts.
In particular, the possibility of a donor selling his or her
own organs was debated. This topic raised uneasiness and
was described with word or phrases such as: ‘unpleasant’,
‘unhealthy’, ‘no, no, no’, ‘does not sound good’, ‘immoral’
There was no opposition to blood or organ donations in
themselves, it was introducing ‘the market’ that was
problematic. A major concern articulated in the groups was
that financial incentives for organ donors could lead a
person to make the decision to donate based on wrong
premises. Issues of greedy intermediaries, unregulated
‘black markets’ and exploitation of underprivileged per-
sons also emerged.
FG8: R3: In my family a person received a kidney. It
was a boy who died and she got the kidney and … I
have to say that I think it is great. [Universal agree-
ment in the group]. But if she had received it from a
developing country, and paid a lot of money, I would
not think that it was great.
M1: What lies behind this?
R3: … dealers and greed, it is, real buying and sell-
ing. It will be like trafficking of drugs.
To attempt to identify whether there were some addi-
tional concerns, we as moderators tried to set exploitation
and unfair enrichment aside. We suggested alternative
ways to organise the sale of organs or blood, such as via the
publicly owned and run hospital sector in Norway.
FG9: M2: But is it the exploitation that is the prob-
lem? … What about a system where the government
pays you a hundred pounds per kidney?
R4: Oh, I think that sounds terrible. That they offer
money for your kidneys.
R1: Actually I think it sounds a bit convenient.
R4: No, I do not like it.
R2: No, I completely agree.
M2: Why not?
R4: I think it sounds unpleasant, that one starts to sell
R1: [jokingly] Come up with a factual argument now
R4: No, I don’t know—it’s just sort of – like a
When probed it was not easy for the discussants to
articulate the rationale behind their normative judgements.
Although they tried, several commented that it was difficult
to put their opinions into words. They said that some things
just did not seem or feel right, indicating that their views
were grounded in some basic values, feelings and tradi-
tions, something they ‘just had’—‘gut feelings’.
FG6: R1: … so it’s a, well … maybe there are some
kind of values within us that says that we as humans
have an intrinsic value that goes beyond dead things.
So it is possible there is something inherent, within
us. In our blood?
FG9 R1: … and we are raised that way, that it should
not be paid for.
When focusing on blood, financial gain for donors was
also here, for the most part, viewed with suspicion, while
compensation for the donation of breast milk was more
readily accepted. To be paid for a blood donation in a state-
run system sounded like a good idea to some, whilst others
could, to a certain extent, support compensatory strategies
if a donor had some sort of financial loss when donating
blood for research or transfusion. As exemplified below
this view was fundamentally opposed by some participants
expressing that no form for payment, either monetary or as
other gifts, was acceptable. The overall notion in all the
groups was a resistance towards implementing monetary
incentives in donation settings whether they talked about
organs for transplantations or blood to HUNT.
FG6: R3: No, I think it is reprehensible … I should
give away that blood without receiving a mug or a
We’re not in it for the money 155
towel or money. Well, I do not know how much they
get for eggs or sperm nowadays, but I think … kid-
neys, heart, lungs and so forth – where would we
draw the line? … if I want to give away my blood
sample that’s okay, but it should not be sold, because
then we are immediately in the market sphere.
The donation of human biological materials, especially
organs, can be seen as fundamentally problematic in itself,
that one violates one’s self when donating, as one
FG7: R4: Yes, I have donated my body … but it is
something completely [different] … I do not want
money for it. It would almost feel like an insult, a
type of scorn if I did it for money … It is something
Since what is donated is essential and can potentially heal
or even save other people’s lives this act can be less wrong,
the objectification can be lessened or cancelled out, when
the act of donation is kept pure, free from monetary
influences, as the ultimate ‘gift of life’. Thereby we as
donors are able to restore our relationship toward ourselves
by being able to give something that in essence is not ours
As described, it was difficult for many to explicitly
express the reasoning behind their negative views on the
possible introduction of the market in the donor setting.
The words often used were value-laden and much of the
reasoning based on feelings and can be termed as ‘yuck
reactions’. It is possible, though, to interpret the expres-
sions of uneasiness and aversion as based on threats the
market mechanisms are perceived to put on human dignity
and the respect for human worth. The following statement
can therefore be claimed to represent a shared sentiment
found in the groups:
FG6: R4: I am afraid it will do something with human
dignity if we reduce people to a commodity that can
be cut into pieces and sold bit by bit.
This is what we signed up for
When a couple of possible scenarios of commercial util-
isation based on the HUNT and HUNT Bioscience case
were described, the immediate and universal responses can
be summed up by the following statement:
FG3: R7: This is what we signed up for when we
The discussions that followed in all groups unanimously
agreed that the proposed HUNT Biosciences projects
definitely were undertakings that they, as donors, could
endorse. It became very clear that the projects themselves
were uses of the biobank resource that they had
envisioned. Development of diagnostic tests or knowledge
production for the possible advances of better therapeutics
and hopefully also prevention were exactly what partic-
ipants hoped for when making their donations. Opening
the biobank for private actors, however, was a different
Here there were a diversity of reflections and thoughts
that can be seen as ranging from strongly opposing voices
to ones of full support.
FG8: R4: …in fact – I did not consent to commercial
exploitation. It was for research.
FG3: R7: We’re not really interested in them getting
rich – those who flood us with medicine … that is not
what’s important for us.
When asked to substantiate the scepticism demonstrated
towards commercial utilisation the prominent reactions
pointed towards the possibility of someone achieving
unjust financial gain. This was clearly articulated in all our
discussion groups especially with a pronounced scepticism
towards the pharmaceutical industry.
FG4: R6: … the added value ends up in the accounts
that are already overloaded, or are there any guide-
lines ensuring that it will benefit the general public?
All them pharmaceutical companies – they are not
known for altruism
FG8: R2: We envision some sharks at the top and I
have heard very much about that industry … They’re
almost billionaires … it does not taste good you
R4: But it’s not only that. It is that it’s something that
is ours, that we have given away – donated to
R2: And not for someone to make money on it!
R4: No, right.
R5: That’s the point.
How this commercial utilisation is managed and that it
includes strategies which lead to contributions to common
goals and goods were seen to be crucial. The potential
enormous revenues to private companies were seen as
challenging and potentially immoral as only a few, already
strong and resourceful organisations, would harvest the
financial benefits based on a common good.
An inherent structure of commercialism is the drive to
protect ones investments and to maximise potential gains.
Our respondents expressed that within medicine and health
this can lead to the development of unnecessary or even
156K. S. Steinsbekk et al.
FG4: R1: Actually – research should lead to reduction
of the use of medication. But will we get that far?
R6: No, because there is no commercial interest in
the reduction of drug use.
Others questioned why product discovery and develop-
ment could not be done in the public sector or at least
within a non-profit organisation.
FG6: R2: My thoughts on this are very influenced by
the fact that I think the public sector in Norway has a
poor research strategy, I think it’s really bad that we
have left, for example, the area of pharmaceuticals to
private industry … so I think it’s bad that we have
organised ourselves in this manner, that much of this
important research is on commercial hands.
These views coincide with the high trust Norwegians in
general place in governmental and non-governmental not-
for-profit organisations. The business and commercial
sector has an overall lower standing. This is reflected in the
Edelman’s trust barometer from January 2011 (Dinamo
2011), which, in addition, shows a particular distrust in the
On the other hand, voices clearly endorsing HBAS, the
commercial strategy chosen for HUNT and ‘their’ biobank
were also heard:
FG3: R7: If they are not allowed to do research on
our blood samples then travelling around and gath-
ering them are pointless. They must be allowed to use
FG4: R3: I agree, they should go down that road –
actually … otherwise there is no point in collecting,
there’s no point in sitting on a million blood samples
if they are not used.
The supportive responses reflected pragmatic views; that
commercial utilisation is ‘a part of the zeitgeist’ or ‘that
this is how the world operates’. They also acknowledged
commercial actors’ part in taking novel medical products
from ‘bench to market’. It was of utmost importance that
the biobank resources are actually utilised.
The positive intuitions also included an endorsement of
the framework of HBAS. That it is publicly owned and
locally based. Part of its mission is to channel some
financial gains back to the local community via health
initiatives and research. Others pointed out, that biobank
research carries large financial costs and that the public
sector could not bear them all. Thus, commercial actors are
needed to provide the financial strength to realise some of
the hopes and aspirations of the biobank project.
FG4: R1: …think there must be some other interests
[other than govermental] as well to be able to utilise
the resources that are there.
A couple of groups rendered HBAS as something dif-
ferent than a pure broker. They thought commercial utili-
sations of the biobank resources under the regulations and
governance set for HUNT and HBAS acceptable, given
that the main aim is to develop important products that will
improve people’s health:
FG6: R1: But as I read it, there are strict guidelines
for HBAS … the projects have to be approved by
both the management group [at HUNT] and the REC
[research ethic committee] … there will be specific
applications … I think that it is important use of the
material which ultimately should benefit society and
individuals … They can be helped with drugs or new
diagnostic tools … And there are actors in our society
that can use this with good intentions, to benefit
people and at the same time earn some money.
The focus on useful product development, in addition to
financial gain, was seen as crucial, and an important pre-
requisite to accepting involvement by commercial actors.
A further positive factor was that these projects were
subject to the same quality controls and ethical evaluations
as the traditional academically run research projects. In
addition, privacy issues were raised, and keeping the
materials and data de-identified or anonymous was seen as
an essential requirement for them to be able to perceive
these developments as acceptable.
Norwegian legislation prohibits ‘‘commercial exploitation
of research participants, human biological materials and
health related information, as such’’. Based on the
assumption that laws actually reflect common morality, we
expected to find a strong emotional and moral opposition to
commercialisation of biobanks in our focus groups. What
we found, however, was a clear distinction between the
ethics of donating human biological materials and the
ethics of using already donated samples in a biobank. The
moral deliberations on organ and blood donations informed
the discussions of commercialisation, in the sense that it
demarcated them into two different spheres, characterised
by two different sets of moral concerns. This can be seen as
a strategy to set a boundary between person and things,
explained by Hoeyer (2005) as essential to the capitalist
market. The bodily sphere has to do with our intimate
relationship between body and soul, involving strong
evaluations on proper and non-proper ways of handing over
body parts or biological material to others. The communal
sphere relates to the communal arena and how we have
chosen to organise and carry out activities where there are,
in varying degrees, both public and private actors.
We’re not in it for the money 157
The body is not for sale
In our respondents’ minds the act of donating human
biological material is part of the bodily sphere and needs
to be kept outside the realm and the pressures of the
market. Being paid for the donation of organs or blood
was in general rejected in all our groups, and parallel
findings, for example, found by both Schweda and
Schicktanz (2009) and Hoeyer (2005). But as indicated in
the previous section a couple of the respondents thought
that a system where blood donors were reimbursed could
be justified while still opposing payment for organs. Our
informants first and foremost articulated the threat
towards oneself, and being paid would increase the
potential for being lured into doing something that in
essence could harm. The harm could be divided into two
categories. The first would be direct physical harm. The
second is the harm towards oneself when human dignity
and worth are threatened, or when engaged in actions that
lead to fragmentation, objectification and commodification
of the human body.
Both of these aspects were drawn upon in our focus
group discussions. These intuitions comply with the nor-
mative content of various legislation and guidelines. In
addition, we can see ideas of the reciprocal principle of gift
exchange. As Hoeyer (2005) describes keeping the dona-
tion voluntary and free from financial gain the ‘gift rela-
tionship’ puts obligations on the receiver which would be
undermined by sale of blood and other body parts. There-
fore financial incentives can be seen to distort the essence
of the ‘donor–recipient relationship’ that we as a society
has deemed ethically acceptable.
Human biological material should not give rise
to unjust financial gain
Commercial use of the biobank resource triggered resis-
tance in our groups because of unjust and unfair market
mechanisms. This parallels the findings of Haddow et al.
(2007) of deep resentment towards the possibilities of
private companies harvesting a substantial financial profit.
The moral concerns of justice and fairness in commercial
use of biobanks were not raised as a problem of unjustness
or unfairness towards ‘me’ as a donor but in more political
and communal sense as a problem for ‘us’—as part of how
we organise our society. It was unjust financial gain that
was the major problem, not financial gain per se. This is
interesting in relation to the restrictive formulated laws and
how they should be interpreted.
Ideas about identity and commodification indicating that
‘‘‘something is lost’ and people are disrespected when
commercialisation enters the picture’’, as Haddow et al.
(2007, p. 278) write, were totally absent in our groups. This
could be due to our discussants clear separation of spheres
where they for the most part wanted to keep monetary
incentives out of the donor setting. To them it was quite
evident that the actual cases of commercial use of the
biobank presented had nothing to do with the commer-
cialisation of the body. Despite the aspects of injustice and
unfairness, many of our discussants accepted or even
endorsed the developments of potential commercial use of
the HUNT resources through HBAS. This can be attributed
to the pragmatic notion of the necessity of commercial
actors’ involvement in facilitating the realisation of
potential health benefits based on biobank resources also
registered by Haddow et al. (2007). The clear distinction
made by participants between issues of dignity and justice
in these matters questions the emphasis put on human
dignity in various expert discussions surrounding the eth-
ical stance of biobank donors.
A recurrent theme in expert discussions is that biobanks
contain human biological materials and information that
can be seen to embody the donor. As mentioned, we
actively facilitated the emersion of these aspects in our
focus groups by preceding the discussion on commercial
use of biobanks with a discussion of commodification.
Contrary to Hoeyer’s (2004) findings we did not at any
time in our discussions see any expressions of blood or
other materials as an elongation of ‘themselves’ in any
particular way. No traces were shown of ideas that blood or
other biological materials in the biobank embodied the
donors as individuals in a more fundamental manner than
that that it was a source of information. This is interesting,
especially related to the last decade’s discussions of
genetics and genomics and the essential character it has
The lack of concern for human dignity and worth when
talking explicitly about sample utilisation in our focus
groups seems to suggest that theses aspects primarily are
meaningful when biological material is still part of the
body. As soon as it is donated a different ‘logic’ seems to
come into operation. Important aspects here can be the
generally good standing HUNT has in the local community
and the particular framing of HUNT Biosciences. When
donors trust the biobank organisation and systems are in
place to prevent misuse they do not have to worry, aspects
of dignity are taken care of and therefore not discussed.
Our findings here parallel the analysis given by Hoeyer
(2005); when regulations that by prohibition decommodify
the donor setting are in place we can relax because what is
threatening our essence is taken care of. In a biobank set-
ting the deed is done, a gift is given and it is the stewards’
responsibilities, not mine, to ensure that anonymity and
professional secrecy is granted and that the promises of the
project are fulfilled by utilising the resources in a proper
158K. S. Steinsbekk et al.
Possible influences of topical framing of the focus
In the preceding analysis we identified that participants
in the focus groups drew a clear distinction between the
concern for dignity in donation and the concern for
justice in use of samples. Was, however, this distinction
predetermined by the topical framings of our focus group
questions? The problems of commercial organ donation
were a major concern for the participants when dis-
cussing the ethical questions of ‘the market and the
human body’, while in the subsequent discussion of
HUNT Biosciences the commercial use of blood samples
was the matter of concern. Was, in fact, this difference
in ethical concerns simply caused by the focus group
participants being asked to examine ethical ‘apples and
We introduced the first topic of the ‘market and the
human body’ in the focus group sessions because con-
ventions and regulations referred to above indicate a link
between this theme and the second of ethical problems in
commercial utilisation of biobanks. Furthermore, we
wanted to give the discussants an opportunity to draw upon
their moral reflection on more familiar scenarios of trade
and monetary compensation in relation to blood, milk and
organ donation when getting into the vaguer area of com-
mercial use of biobanks.
Introducing the topics in this way also parallels the
chronology of the endeavour of building large population-
based biobanks in Norway. The first step was the primary
recruitment of donors and the donation of biological
materials and data. Then, when a sufficient amount of
donor contributions were processed, the utilisation step—
the use of the resources in various research projects—was
taken. What commercialisation or commercial use of such
biobank resources entails is often unarticulated and
unclear. The ethical questions and chronology of this
process is thus mimicked in the topical framing of our
focus group sessions.
To our surprise, the dignity discourse of the first topic
did not at all carry over into the second. Not even the
participants who most strongly opposed commercial use of
biobank samples referred to dignity aspects in this setting.
These participants did not find it relevant to argue from
concerns about dignity in the discussion of commercial
utilisation of biobanks. Conversely, when discussing the
ethical problems of donation of any kind of biological
materials the participants framed it in terms of dignity,
even when prompted to see it rather as a matter of justice.
In our case the topical framing clearly formed the discus-
sions, but rather than giving us a continuum of concerns as
indicated by conventions and regulations, a divide of
concerns was found.
Benefit sharing and commercial use
For the HUNT donors the general governance of the
commercial activities based on the HUNT resources and
the benefit sharing implemented in the framework of
HBAS was important to be able to accept the develop-
ments. We see the HBAS strategy as a viable solution to
the ideas of benefit sharing extensively debated and as, for
example, called for by Haddow et al. (2007). Though the
framework of HBAS (Steinsbekk et al. 2009) lacks the
requirement of an explicit proposal for benefit-sharing and
an approval of this by a standing committee for each
commercial research project as suggested by Haddow et al.
(2007), an upfront public contribution fee from each pro-
ject and financial return to the research and health com-
munities is an essential part of the HBAS strategy. Since
biobank activities in essence are collective, the donors’
perceptions of what they had contributed to were to the
common good, to future health benefits for the communal
‘us’. The study they had participated in was a government
funded, public and collective endeavour. Therefore, it was
important to them that the benefits, including financial,
should be distributed in what is perceived as fair and just,
in a communal manner.
We claim that the insight demonstrated by these
respondents can be seen as an understanding of the com-
munal framing of ‘their’ biobank project which does not
involve ‘me’ as a single individual. A single donor is not
what the project is about; the participation of a single
person does not alter the knowledge produced. Or, as
Webster et al. (2008, p. 39) registered when talking to lay
people about UK Biobank: ‘‘For them … one sample did
not lead to an analysis or a discovery; rather, it was the
group of samples that would provide [the new knowl-
edge]’’, thereby acknowledging that what is essentially
crucial for the biobank project is ‘me’ as a part of a ‘we’. In
the HUNT project this is communicated via its’ public
health framing, which has been emphasised from the start.
Following this thread it seems appropriate to suggest that
the primacy on individual autonomy in biobank settings
has been exaggerated. A shift in biobank ethics from the
individualistic framing based on traditional medical ethics
towards the communal aspects of public health ethics, as
argued in regards to bioethics in general by Dawson
(2010), also seems to resonate with lay people interviewed.
Commercial uses come in many shapes and forms
Commercial companies and market mechanisms are how
we today have chosen to organise essential developments
and product delivery both within medical practise and
biomedical research. Even though this strategy has nega-
tive aspects of exclusivity, potentially unfair revenues and
We’re not in it for the money159
unequal distribution in many areas alternative strategies do
not seem to emerge as viable options. Of importance here
is then how commercial companies are regulated when
accessing common goods like biobank resources. Equally
important is the implementation of proper material transfer
agreements, that appropriate benefit sharing mechanisms
are in place and the corporate social responsibility strate-
gies within the commercial entities involved. In addition,
that the biobank resources are governed in tune with the
common project, should be for the common good. Com-
mercialisation per se is not good or bad in the eyes of our
participants, but the uses to which it is put are. For or
against markets is too simple a question, as our focus
groups discussions amply illustrate.
Commercial use of biobank resources is a complex chal-
lenge. Is it possible to find an appropriate form in public
biobank endeavours? Involving lay persons acquainted
with biobanks in a discussion over the ethical implication
of a real case of biobank commercialisation gave important
insights. The apparent separation of spheres between the
act of donating human biological materials and down-
stream uses of the resources are clarifying. What ‘we’
primarily are afraid of in the arena of human biological
material is that the relation between self and body shall be
compromised, transforming it into a market relation. Our
participants expressed a marked resistance to the idea of
‘selling oneself’. Getting paid is not a morally acceptable
solution to the challenge of benefit-sharing. It would only
make things worse. Strict policies and regulation of com-
responds to this deep-rooted moral concern.
This fear, however, is not recognisable when biological
samples are stored in the freezers of the biobank. The
human biological material is no longer an extension of
‘me’ in the sense that dignity, commodification and self-
respect are at stake. For our focus group participants,
inherent aspects of unfairness and injustice and ethical
aspects of how the market, especially in pharmaceuticals, is
run and regulated, became the primary focus when util-
isation of the samples was discussed. Although some
opposition towards commercial actors was voiced, these
intuitions show that it is possible to render commercial use
of biobanks ethically acceptable based on frameworks and
regulation which hinders commodification of the human
body and promotes communal benefit sharing.
for taking the time to share valuable thoughts and insights. This work
is supported by the Research Council of Norway. It is done within the
We want to thank the focus group participants
project ‘In genes we trust? Biobanks, commercialisation and everyday
life.’ Which is an ELSI project under the Research Councils func-
tional genomics, FUGE, programme. This funding source has not had
any involvement in the preparation or conduct of this research.
Creative Commons Attribution Noncommercial License which per-
mits any noncommercial use, distribution, and reproduction in any
medium, provided the original author(s) and source are credited.
This article is distributed under the terms of the
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