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This article was downloaded by: [The Aga Khan University]On: 17 October 2014, At: 08:25Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registeredoffice: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
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National interests and internationalcollaboration: tensions and ambiguityamong Finns towards usages of tissuesamplesAaro Tupasela a & Karoliina Snell aa Department of Social Research/Sociology , Helsinki Institute ofScience and Technology Studies (HIST), University of Helsinki ,FinlandPublished online: 07 Aug 2012.
To cite this article: Aaro Tupasela & Karoliina Snell (2012) National interests and internationalcollaboration: tensions and ambiguity among Finns towards usages of tissue samples, New Geneticsand Society, 31:4, 424-441, DOI: 10.1080/14636778.2012.692548
To link to this article: http://dx.doi.org/10.1080/14636778.2012.692548
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National interests and international collaboration: tensionsand ambiguity among Finns towards usages of tissuesamples
Aaro Tupasela∗ and Karoliina Snell
Department of Social Research/Sociology, Helsinki Institute of Science and TechnologyStudies (HIST), University of Helsinki, Finland
Recent trends in biobanking indicate that the practices associated with thecollection and use of human tissue samples and related health information areincreasingly becoming premised on networks of biobanks. These networksand partnerships often involve international collaborations, as well as public–private partnerships. This article reports on the results of a study of people’sattitudes towards biobanking and the biomedical use of tissue samples inFinland. Three approaches were used to study these attitudes: a population-based survey, focus group interviews among members of patientorganizations and short interviews with research participants. In particular, welook at the attitudes of respondents in these three studies towards the use oftissue samples and use them as a catalyst to discuss two dimensions ofbiomedical research: public/private and domestic/international. Ourdiscussion highlights how notions of value related to the use of tissuesamples vary and provide contrasting perspectives and ambiguity that peoplemay have towards various types of research partnerships and the benefits thatmay arise from them.
Keywords: biobanks; nationalism; donation; participation; tissue samples;tissue economies
Introduction
During the last decade the development of biobanking around the world hasgarnered increasing attention both scientifically and politically (Hansson andLevine 2003, Knoppers 2003, Tutton and Corrigan 2004, Gottweis and Petersen2008). Although many biobanking projects have drawn on the rhetoric of nationalidentity, such as with UK Biobank and deCode in Iceland (Busby and Martin2006), and promoting the development of bioscience is framed as a means toboost national competitiveness (Tupasela 2007, 2008, Snell 2009), there hasemerged a need to increasingly develop networks and partnerships between
New Genetics and SocietyVol. 31, No. 4, December 2012, 424–441
∗Email: [email protected]
ISSN 1463-6778 print/ISSN 1469-9915 online
# 2012 Taylor & Francis
http://dx.doi.org/10.1080/14636778.2012.692548
http://www.tandfonline.com
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various actors in this field (Asslaber and Zatloukal 2007, BBMRI 2008, Mayrhoferand Prainsack 2008, Gottweis and Lauss 2010). These networks and partnershipsare often international and comprise actors from both the public and privatesectors. Scientifically this trend is being driven by the need to validate findingsin more than one population (Kere 2007), as well as the realization that increasinglylarger population sets are needed in order to gain statistical significance concerningthe causes of multi-factorial diseases (M’charek 2005). Politically this trend hasbeen driven by a need to consolidate scarce resources and develop critical massin the field of biomedical sciences (European Commission 2002a), as well as thehopes and expectations that are associated with the biomedical sciences (Helen2004).
In relation to science and technology policies in Europe a trend has emergedwhere policy makers seek to respond more flexibly to the demands of societyand develop a more robust and responsible system of communication with thepublic (European Commission 2002b, Snell 2009). This communication is an inte-gral part of legitimizing policy actions in research fields which are seen as conten-tious (Hansen 2006). The development of the field of biobanking has also produceda plethora of studies looking into the opinions and attitudes of the public towardssuch practices (Stegmayr and Asplund 2002, Hoeyer et al. 2004, Kettis-Lindbladet al. 2006, Haddow et al. 2007, Tupasela et al. 2010).
In this article we explore diverging public perceptions and ambivalence towardsthe use of tissue sample collections among Finns. We examine divergences in theway people relate to the use of tissue sample collections by the public or privatesectors, and in a domestic or an international context. We discuss these findingsin relation to the notions of value and significance that people attach to donatedsamples (cf. Waldby and Mitchell 2006). Within this theoretical context the useof tissues is seen to constitute a political economy where the productivity oftissues intersects with the productivity of markets. Given this starting point, weargue that the productivity of tissues and the markets that they constitute arerelated to the ways in which the sources of these samples (donors) view the wayin which markets operate or ought to operate in relation to the use of thesamples and the ways in which the use of donated samples are seen as legitimateand acceptable in these markets. Following previous studies on public perceptionstowards the biomedical use of tissue sample collections (Haddow et al. 2007), weargue that the notion of a singular public is problematic (Hoeyer 2010). Instead, therelationship between public perceptions and issues related to biobanking ismediated by the context in which biobanking is taking place in various countriesand the ways in which the participants in questionnaires and interviews are posi-tioned and interested in the issues (cf. Gottweis et al. 2011). In this sense biobank-ing is no exception.
A central aspect of tissue use, however, can be said to be rooted in an ambigu-ity and uncertainty that lies in the ways tissue sample collections and their relatedinformation become productive (cf. Tupasela 2011). We therefore examine the
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perceptions of Finns towards the use of tissue samples in public and privateresearch and by domestic and international companies to create a more nuancedpicture of the relationship between the sources of tissue samples, the expectedproductivity (the creation of various forms of value), and the consumers of theend products. We see this as having particularly important policy implicationsgiven the role that biobanks are seen to have in the future and the fact thattissues and their associated information are increasingly deployed in internationalnetworks.
In Finland, the notion of the national innovation system has been prevalent inrelation to arguments set forth to support biobanking (Tupasela 2008). Increasingly,however, the nature of biobanking goes beyond national borders and it is becomingmore difficult to define the ways in which tissues and information become pro-ductive in a public and/or a national way. In this sense, the globalization oftissue economies also produces an increased level of ambiguity among the popu-lation as to the local significance related to the global circulation of tissues andinformation. We see this contributing to what Sunder Rajan has termed the analysisof the production biocapital which looks at “multiple forms of currency, such asmoney, information, and biological material, all simultaneously dependent onone another, yet not necessarily travelling the same circuits at the same time”(Sunder Rajan 2006, p. 43). The opinion of the public, as well as participants inbiomedical research forms, therefore, an important circuit through which tissueeconomies and the production of value (biocapital) operate. A traditional tensionand focus of study within the production of scientific knowledge has looked atthe relationship between public and private research where the established ethosof science has been challenged by new systems of public–private interactionwithin academia (Merton 1973, Owen-Smith and Powell 2002). This relationshipis important in the development of tissue economies and the production of valuesince it provides new avenues and forms of circulation through which tissuesand their related information can be leveraged and used. In this article, however,we wish to go one step further and examine ambiguities and tensions that peoplehave in relation to the use of samples by domestic and international companiesin contrast to use for national public research since these differences highlightthe challenges which policy makers face. People’s differing views, understandingsand ambiguities related to tissue sample collections and related information ininternational research partnerships have an important impact on the acceptabilityof biobanking generally and are thus of great policy relevance (Gaskell andGottweis 2011). This dimension adds another layer to the traditional public/private question by provoking donors to ask about the significance, potential andrisks involved in tissue samples being used beyond one’s national borders.Although international cooperation in scientific research is hardly new, the partner-ships and networks being developed within biobanking give a heightened urgencyto pose these questions in more detail as they relate to the donation and use ofhuman tissue samples.
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Finland, like many other countries, has been collecting human tissue samplesand related lifestyle and health information for medical research for decades.In relation to the national character of innovation policies the relationshipbetween international collaboration and the use of national tissue sample collec-tions is not a straightforward one. On the one hand, tissue samples and relatedhealth and lifestyle information are collected and stored within the national(local) setting. On the other hand, biomedical research is premised on internationalcooperation where the flows of information and material have become an importantaspect of the development of tissue economies (Waldby 2002, Tupasela 2008).
Herein lies a tension between innovation policies and biomedical research inrelation to tissue samples and biobanks. On the one hand research and developmentfunding is seen to play an important role in bolstering national economies andpublic health, while at the same time biomedical research is increasingly inter-national in nature, some might even say that it always has been international innature. This process has been accompanied by a need to mediate divergingnotions relating to the biomedical collection, storage and use of human tissuesamples and health information in Finland, as well as in many other Europeancountries.
Research materials and methods
The study examined people’s attitudes using multiple methods and target groups toprobe the same questions. These methods combined both qualitative and quantitat-ive approaches which were organized in a sequential fashion in order to facilitatethe use of inputs from the previous results for the development and design of thefollowing study (Ivankova et al. 2006). Previous studies on attitudes towards theuse of biomedical tissue samples have drawn on a host of different methodologicalapproaches, including population-based surveys (Hoeyer et al. 2004, Hemminkiet al. 2009, Tupasela et al. 2010, Critchley et al. 2012) and focus group interviews(Haimes and Whong-Barr 2004, Tutton 2007, Godard et al. 2010, Lemke et al.2010, Snell et al. 2012). Our study used multiple methods in studying attitudes.Although we recognize the debate within social science methodology which ques-tions the epistemic foundations of combining methodological approaches (Lincolnand Guba 1985, Kelle 2001) we consider the use of multiple methods to yieldimportant insight into research areas by increasing scope, depth and consistency(cf. Godard et al. 2007, Morgan 2007). We use these different methods as catalystsfor discussion and exploration of attitudes, but do not assume them to be compar-able in a strict sense. Such approaches, nonetheless, bring forth vital informationrelating to the various dimensions of public opinion and decision making.
In this article we use results from a population-based survey, focus group inter-views among patient organization members, and research participant interviews toserve as a catalyst to discuss differences concerning people’s views towards the useof tissue samples by domestic and foreign companies, as well as public and private
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research. Although many of the opinions in the other questions concurred with eachother, our questions relating to the domestic/international and public/privatenature of sample use elicited the greatest differences among respondents. The dis-tinctions (dichotomies) that were studied were created by us in the survey and inter-views. The differences in responses between various methods, however, indicatethat people think through the issues in different ways depending on their back-ground. This difference in responses is what we find interesting and significant.Although we recognize that this could be explained as a “one-off” event, it hasalso been argued that commonalities between answers using different method-ologies can be misinterpreted as a form of mutual validation (Flick 1992). We there-fore conclude that the exploration of differences between answers to a questionmerits the same amount of attention as where there is concurrence betweenresponses and further argue that the study of such differences yields importantinformation in relation to combining mixed methods research results.
The first study that was conducted was the population-based survey, which wassent to 2400 Finns aged 24–65 and was conducted at the beginning of 2007 (Sihvoet al. 2007). The randomized sample was composed of Finnish-speaking peopleliving on mainland Finland to whom a postal survey questionnaire was sent. Thesampling source was the Finnish Population Register Centre, which maintains acomplete listing of people living in Finland. Those people who did not answerthe first mailing received a reminder one month later. The final response rate was50% (n ¼ 1195). The questionnaire was composed of 28 questions, the majorityof which were multiple choice questions. The themes of the questionnairecovered levels of knowledge, informed consent in medical research, attitudestowards the use of existing diagnostic and research samples, and attitudestowards the setting up of a national biobank. Respondents were asked abouttheir views in relation to diagnostic and research samples since Finnish law onthe biomedical use of tissues currently makes a distinction between them and thepossibilities of their use. The questionnaire development process also took intoaccount earlier studies and literature on issues related to biobanking (Hoeyeret al. 2004, Kettis-Lindblad et al. 2006). Some questions were preceded by anexplanation of the technical terms, or a practical scenario was used. Here we useresults from two questions relating to the attitudes of Finns towards the use of diag-nostic and research tissue samples by domestic and foreign companies.
The second study was comprised of four focus group interviews among membersof different patient organizations. Even though belonging to patient organizations,the vast majority of the participants were not patient activists in the political sense,but described their motivation for belonging to a patient group as a possibility toreceive information and peer support. With a total of 27 participants, the groupswere composed of 6–10 people aged 36–71 in three different locations inFinland. The majority of the participants were women (20). Most of the participantswere recruited through Suomen Potilasliitto (Finland’s Patient Union) which is anumbrella organization representing a number of smaller Finnish patient groups.
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Focus group interviews have been used to study the attitudes of lay people inrelation to a multitude of issues relating to biobanking (Tutton 2007, Lemkeet al. 2010) as well as medical research (Asai et al. 2004, Jepson et al. 2007).The goal of the focus group interviews was to get people to talk about their attitudestowards biobanks and the biomedical use of tissue samples. We used a semi-structured interview script that had been developed based on the questionnaireand especially those questions which we had identified as requiring further inves-tigation. We also asked the participants about their opinions on informed consent,as well as the use and re-use of samples in various settings and by different actors.Discussions were always preceded by an explanation of terms and practices andfollowed the themes which had been covered in the population-based survey.The excerpts presented in this study have been translated from Finnish into English.
We are aware that the use of participants recruited for the most part throughpatient organizations has a skewing effect on the opinions that will be presented,in that the issues discussed become framed through illnesses and the role of apatient. We feel, however, that the use of members of patient organizations wasimportant since many of them had some idea of the questions and problems thatexist within and in relation to biobanking and biomedical research (cf. Haddowet al. 2007). In many cases the participants were able to reflect directly on questionsin relation to personal experiences. It can also be argued that patient organizationshave become important players within the field of biomedical research (Novas2007, Mayrhofer 2008). In Finland however, according to our interviews, patientorganizations’ role is more marginal. Focus groups composed of patients or rela-tives of patients reveal opinions of a special and relevant group that may be dis-carded if only surveys of the general population are used as a source of publicopinion. This can also be seen the other way round. Patients are often referred toas “lay experts” who are able to contemplate medical issues because of their per-sonal experience. Biomedicine and biobanks have however implications thatstretch over the medical realm and need to be evaluated by people with fewerties to the medical sector (see also Goven 2008). Even though patients can be con-sidered as experts in their disease from the personal perspective it is important tonote that hardly any of the participants had previous knowledge on biobanks.
The third study we conducted was comprised of data collected through researchparticipant interviews (face-to-face interviews). These 23 short interviews werecarried out in the context of a national diabetes prevention research conductedby the National Health Institute in 2007, whose participants were selectedthrough a randomized population sample. Interviews were carried out after theresearch participants had taken part in a glucose tolerance test, a medical exam,and had filled in a number of questionnaires concerning their health and lifestyleinformation. The interviewees (aged 45–71) were presented with 10 open ques-tions about informed consent and other possible uses of their tissue samples.
Although the answering of a questionnaire, participation in a focus group andface-to-face interviews represent very different processes and “publics” in regard
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to the dynamics of opinion development and the target groups are also compriseddifferently, we believe that comparing and contrasting these sources of opinionhelps to highlight and identify differences in people’s attitudes, as well as bringforth how different methodologies of opinion gathering bear an influence on theopinions. In the next sections we present our empirical findings as they relate toopinions concerning the domestic/international dimension of research and thenlook at the public/private dimensions that we enquired about in our research.
Nationalism in research
Biobanks, especially large national biobanks, as well as DNA are often character-ized by reference to nation states and contextualized by reference to nationalhistory, welfare and health care (cf. Rabinow 1999, Busby and Martin 2006, Tam-minen 2010). They have also become inextricably linked to wealth creation andnotions of national pride and modernization (Sunder Rajan 2006, Mitchell andWaldby 2010). In a similar vein, the results of the population survey that we con-ducted indicate a kind of national protectionism. Respondents were more willing tohave their samples used by domestic firms as opposed to international firms(Table 1). The willingness of respondents to allow samples to be used by domesticcompanies (78%) for the development of medicines and treatments was signifi-cantly greater than their willingness to allow their use by international companies(42%).1 The number of respondents who were not able to say, however, doubled inrelation to the use by international companies as opposed to domestic companies,which suggests that there is nonetheless quite a bit of ambiguity in relation to thisperspective.
In relation to concerns about biobanking, 70% of respondents were either veryconcerned or concerned that their samples would be sold overseas, whereas only34% were very concerned or concerned that their employer would gain access to
Table 1. For what purposes could samples stored in the biobank be used?
Yes No Uncertain
I would not givemy sample to a
biobankTOTAL %
(n)
Medical research in public institutions(such as universities and publichospitals)
78 6 14 2 100 (1158)
International medical research 49 16 31 3 100 (1127)For the development of medicines and
treatments in Finnish pharmaceuticaland biotech firms
78 4 16 2 100 (1162)
For the development of medicines andtreatments in international firms
42 20 33 5 100 (1118)
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them and 45% were very concerned or concerned that insurance companies wouldhave access to them. In this context, once again, the issue of samples going over-seas, as opposed to ending up in domestic use, raised more concerns among thepopulation survey respondents. This reflects a protectionist stance in terms oflabor relations, but within a setting where the field of biotechnology and its avail-able resources serve as the matrix in which jobs and wealth are created. This pol-itical stance is quite common within the politico-economic rhetoric which hasemerged in relation to the knowledge-based bio-economy.
Although the distinction between domestic and international firms is problematicto make since biomedical research is international in nature and is highly dependenton international networks and collaboration it is, nonetheless, in this context thatwe found the results of the questionnaire comparative to the results of the focusgroup interviews interesting in light of this dichotomy. The results in the question-naire provide one snapshot of people’s perceptions within the Finnish contexttowards the use of samples domestically and internationally in companies, onethat is also uncertain in that a high number of respondents noted that they wereuncertain of their position in relation to whether they would allow their samplesto be used by international companies.
The perspective regarding international vs. domestic research that was expressedby the patient organization members in the focus group interviews was quite differ-ent however. Within the focus group discussions participants were very aware ofthe fact that domestic and international business and research were very much inter-twined. Many noted that rarely is research purely domestic and that sharing knowl-edge internationally was preferable. The participants also noted that there were veryfew companies that were strictly national or domestic in nature and that for the mostpart companies are international and in many parts owned internationally. Somenoted that they trusted Finnish research more than international research;however, most noted that the international research field was seen to be furtherahead than the Finnish research field alone.
As one participant noted in relation to the distinction between domestic andinternational companies,
Today the situation is such that there are very few purely domestic companies. Mostcompanies are owned by foreign investors so it’s very difficult to start to make such adistinction.
Another participant commented on the issue in the following way,
I was thinking that you can’t really tie it to the international and Finnish dimensionanymore when even researchers don’t stay within the Finnish borders, but insteadhead off to the US or Japan if they are interested.
The dichotomy that was presented in the questionnaire and to the focus groups wasbrought into question by the patient organization members. In the survey, researchby international companies was framed not as cooperation, but as a possibility forforeign companies to use tissues in Finnish biobanks. Patient organization members
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questioned the degree to which it was possible to make this distinction not only inrelation to companies, but also in relation to the way researchers are able to movearound from one country to another. The artificial division was also questioned bymany in our research participant interviews:
Today there is no difference between Finnish and foreign companies.
It is the same whether it is a Finnish or a foreign company.
If you need large sample collections then it has to be international.
Some, however, felt that samples should remain in the hands of Finnish researchers:
Samples should be primarily used by Finns since there are so many dodgy charactersout there.
The patient group members did not just question the relevance of the domestic/international dimension of research, but also sought to examine it in a more politi-cal context as is indicated in the following interview excerpt where a participanttalks about the relevance of where research is conducted:
There are differences. If the research is done in Germany or France and it receivesmore funding due to the political weight of those countries, as is taking place in anumber of research fields in biomedicine, then I support it . . . doing the research inGermany or France. President Chirac is such a bold person that he can get fromthe EU 300 million euros when us Finns can only get 10 million euros, then it’s inall our benefit that it’s done in France.
Another member in a focus group reflected on the international dimension ofresearch from a different perspective, noting how international research can onthe one hand be detrimental to some, while beneficial to others:
Then you have these cases where they take samples and collect data in developingcountries, but the benefits are primarily for us [western people]. So it’s a problemif the benefits go to a group of people who are already better off; the benefitsshould be distributed more evenly, at least the medications. People don’t havemoney for HIV medications or vaccines for children.
As part of the focus groups, we asked the participants to place certain uses ofbiobank material into coordinates according to their risks and acceptance. Bothdomestic and international research was regarded as very acceptable by patientorganization members, yet international research was accredited with more risks.This illuminates well the opinions about domestic/international research in thefocus groups but also in our two other types of data. Unwillingness to givesamples to international companies is not necessarily related to negative opinions,but reflects the uncertainties and risks that are associated with non-domesticresearch.
In the face-to-face interviews of research participants, the interviewees wereasked to state whether they should be asked for a new permission if their
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samples and data were to be used by a Finnish company and by a foreign companyfor medical research. Most were willing to give their samples and data for the use ofFinnish companies, but with foreign companies, most wanted to be asked for newconsent. In the follow-up question, the interviewees were uncertain whether theywould give permission if asked. It was said to be dependent on the country, thecompany, the purpose, etc. The respondents did not have a negative attitudetowards international companies, but were ambivalent and would have wantedmore information in order to be able to make a decision.
Commercial vs. public research
The results of the population survey showed that people were less concerned aboutthe public/private distinction in research, at least domestically, as opposed to thedomestic/international dimension, since 78% of respondents were willing toallow samples to be used by domestic companies; the same percentage of peoplewould allow this in public research institutes (78%, n ¼ 1162). This positionwas also supported and reflected in the patient organization focus group interviewsconducted in Finland. As one respondent noted in relation to whether there was adifference between samples being used by private or public actors:
Not in my opinion, it’s the same, even though the research is being conducted for thecommercial sector it’s the same. It’s just as useful as research done in publicinstitutions.
Another participant noted that it made no difference whether it was the public orprivate sector exploiting the results since the goal is to get return on investment:
You always need research to do science, but its exploitation is almost always a com-mercial matter. So in this sense you need to get it to work. In England there have beensome strange cases where the university can’t do any type of business, so you have tohave some type of company that will exploit the result. So I don’t see any difference ifit is a company or the public sector that exploits it as long as it goes towards acommon good. You always have to get some type of interest for your investment,that’s what it’s all based on.
The patient organization members did not make a significant differentiation inrelation to who was doing the research and who was exploiting (commercializ-ing) it in the end. For many participants in the patient organizations what wasof importance was the end result, meaning that what they were interested inwas that somebody was able to develop a treatment or a cure to a givenailment or disease. In this sense, the respondents in the patient organization inter-views were more reflexive and pragmatic in terms of their approach to the use ofresearch results. On the other hand their position as patients contains interest thatcan differ from the people in our population sample and research participantinterviews who might not have similarly intensive experiences with diseases(Goven 2008).
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I think it is the same, despite the fact that the research is done for commercial pur-poses I think that it is just as valuable as that which is done in the public sector.
I don’t really see any difference whether it is the private or the public sector. In theend so much cooperation takes place between the two and actors move from onesector to the other.
The distinctions that are often drawn between public and private actors in relationto research were questioned among the participants in the focus group interviews.Once again, the patient organization members emphasized the end results as beingthe most important factor that should be considered as opposed to the means orcontext in which the research was conducted. Many in the focus groups also hada very pragmatic approach to commercialization, noting that it is always necessaryin order to take a medication or treatment to market. Furthermore, in many casesthey noted that the benefit of using samples would accrue to future generationsand not themselves:
I would say that if there is benefit from these samples that I have given, to developinga medication, even though it didn’t help me personally, but rather others in the future,then I would see no reason to deny their use.
Despite general positive attitudes towards private companies, the patient organiz-ation members were also critical in some instances. One participant noted:
I was really angry when I received in the mail a pamphlet from a pharmaceuticalcompany. The questions were silly and if you answered them in a certain way thenthe result was that you should contact your physician immediately and ask fortheir medication.
Another patient organization member noted that she had had some problematicexperiences with participating in a public research exercise, but that this did notdeter her from participating:
I had an interesting discussion with the research professor the other day since myblood is internationally in great demand. There’s this center that distributes thisblood, sells it, to thousands of research groups around the world and we discussedwhether he should have informed me about this. [. . .] Of course I gave permissionfor my blood to be used in his project, but now it’s globally available. I’d like toknow where it’s being used, I don’t want to be a means to an end. [. . .] Theynever asked me if they could give it to others. [. . .] They should have an obligationto inform me, not just that I have a right to participate. [. . .] Despite this I’m stillamong the first to participate in research.
Despite bad experiences with companies and public research organizations, patientorganization members were still able to highlight positive aspects related toparticipation.
In the research participant interviews public research was considered to bemore trustworthy. The respondents were more willing to give their samples to be
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used without re-consent by another public research group than commercialresearchers.
I don’t trust the pharmaceutical industry as much as heath care researchers and healthcare.
No [new consent needed], if it’s related to public health, but yes if it’s a pharma-ceutical company, and its business for own purposes.
The empirical data suggests that there are differences in the way people relate topublic vs. private research, but that at least in Finland the domestic private compa-nies tend to enjoy more trust than international companies.
Discussion
The studies we conducted point to how people rationalize or “think through”issues related to biobanking in diverse ways depending on the context in whichthey are asked to consider various issues. Interest groups, such as members ofpatient organizations, may have very different perspectives from those of peoplewho have had no or very little contact with the medical profession, througheither their own illness or that of a family member. Patients have also greater inter-ests at stake – they hope for new cures and treatments in a more concrete way. Inthis sense people may take diverse positions with regard to the production ofscientific knowledge and thus biovalue. This may also reflect the ways in whichthey understand the significance of their donation as a more general componentin the development of scientific research as opposed to a more concrete contri-bution to the development of medications and treatments for a particulardisease. We do not consider there to be a singular public, but rather a multitudeof diverging opinions concerning biobanking (cf. Hoeyer 2010). Despite concerns,such as samples being sold overseas or having greater trust in domestic companiesamong one sample population, other populations might see the situation in adifferent light depending on the criteria that are used to ascribe value andmeaning to activities.
Some commentators have related this trend to symbols of national pride andmodernization (Sunder Rajan 2006). It can also, however, be directly related tothe ways in which actors see and calculate the production of biovalue in that thecollection and use of tissues are related to competition and markets. People arealso not sure of the ways in which their material will become productive and theways in which they will be used. This represents a type of logic where the pro-ductivity of samples is seen in terms of some form of benefit. Although theremay not be direct personal benefit, there is an underlying assumption as to whatkinds of benefit vs. harm will accrue to Finns through such collaboration. The cir-culation of materials and money, therefore, do not always coincide with the ways inwhich research participants or the public perceive or would like these circuits of
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materials to operate, yet at the same time this circulation is in many ways dependenton their approval.
Within the focus groups, the consideration of the amount of investment interna-tionally into biomedical research highlights a number of issues in relation to thedomestic/international dichotomy. First, the amount of research funding thatlarger countries are able to gather around certain research areas is noted as animportant factor. This reflects an understanding by participants of the influenceof investments into the operation of tissue economies and the benefits that canbe gained from them.
Second, the idea that research and research materials, such as tissue sample col-lections, should be kept within national borders reflects an innovation policy per-spective on the importance placed on research and national health care. Thepatient group members raised an alternative view to this position namely that inrelation to the perspective of the patient, the more funding that certain researchreceives, the better it is in terms of the final result of finding treatments or curesfor diseases and ailments. In this sense the political dimension is replaced by apatient-centered view of research (Novas 2007). This by no means de-politicizesthe use of tissue sample collections, but rather introduces an alternative view ofthe ways in which resources should be used.
Third, this perspective is more in line with international guidelines on the use andsharing of tissue sample collections and related information in relation to biomedi-cal research (BBMRI 2008). The need to bring together disparate resources to gainbetter results was seen as important.
Knowledge production and the circulation of tissue samples and related infor-mation have different meaning for different people depending on the ways inwhich they evaluate the significance of the biovalue that is being producedwithin these processes. This may also explain some of the differences that ourstudy produced in comparison to Critchley (2008) who has noted that people areskeptical about the use of stem cells abroad. The type of tissue sample in question(e.g. donor egg, sperm, blood sample) plays a significant role in determiningpeople’s position and the ways in which they come to contextualize productivity.Reproductive labor, for example, may rely more heavily on a set of moral andemotional values as opposed to blood samples and health information (cf. Tober2001, p. 157). The productivity of tissues and markets is therefore linked withthe diverging notions of biovalue that people may have since acceptability andsupport from the population are crucial for the legitimation and operation oftissue economies. At the same time, however, tissue donation in Finland is veryheavily imbued with nationalistic implications drawn from science, technologyand innovation policies despite the international character of research. This alsohighlights the tensions and ambiguities that may exist among the population inrelation to the collection and use of tissue samples in that some groups value inter-national use far more than others and do not make distinctions regarding by whomor where scientific knowledge is produced and samples circulated, but rather focus
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on the output and its significance to their lives and health; others are more skepticaland unsure of the processes of knowledge production that rely on tissue samplesand related health information.
The use of samples in public, private or international collaborations carries withit different forms of meaning for different people, but also produces various formsof ambiguity as to the ways in which samples and information may be productiveand useful. As some studies have noted this may be because people are uncertain ofthe future use of the samples (Treweek et al. 2009, Snell et al. 2012) or they may beuncomfortable with the commercial use of the samples (Haddow et al. 2007, Axleret al. 2008). Similar critical attitudes have been found in other focus group inter-views among the Finnish public. The commercialization of biomedical researchand involvement of the pharmaceutical industry created many worries aboutresearch aims and distribution of benefits (Snell et al. 2012). This difference canbe explained first of all by less concrete interests. Patients may have higher personalexpectations for cures than the healthy population. Secondly, as concerns our face-to-face interviews, the research participants had just participated in a publicresearch project so trust in respect of public research can be expected. Participatingin a national publicly funded research project also produces more direct expec-tations that the benefits will return to the Finnish public through public health care.
Eriksson et al. (2007) have shown that the motivation of participants to supportresearch and participate has been shown to be dependent on research sponsorship.Similarly, Critchley (2008) has argued that people’s trust is greater in publiclyfunded research due to a higher level of trust in publicly, as opposed to privatelyfunded scientists. The dichotomy between public and private has, however, beenproblematic for a long time due to the blurring of the boundary between publiclyand privately sponsored research making the lay public’s distinction between thetwo categories problematic (Chalmers and Nicol 2004). Our study indicated,however, that in the survey people had the same level of trust in domestic compa-nies as they did in public research institutions. In the focus group interviews,however, participants noted that international cooperation might bring with itmore benefits than domestic research, public or private.
The use of national innovation policy rhetoric in Finland has produced to acertain degree a willingness on behalf of research participants to contributetowards this form of national productivity. At the same time, however, people’sunderstanding of the ways in which tissues and information become productiveand useful in the international context remains to a certain degree ambiguousand uncertain, which was highlighted by a patient organization member notingthe benefits that western people gain from exploitation of research in the thirdworld.
Although national sentiments may appear to play an essential or ambiguous rolein people’s perceptions of tissue use, it is important to recognize that biomedicalresearch is very much entrenched within international collaborative networks.The overemphasis of the national perspective in national science, technology and
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innovation policies may very well be misleading to the public at large and ulti-mately cause confusion as to the ways in which medical research operates. Atthe same time, however, we recognize the “work” that such policy rhetoric per-forms in constructing altruism and gift-giving as a secondary commodity whichhas value in itself for the nation and its scientific research program. The sameapplies to the public/private dichotomy. As research projects are often framed asmeans to promote national health and welfare and the donation of samples andinformation takes places usually in the context of public health care, the role ofthe private sector is not clear for the public.
Contributing to biomedical research and biobanks through donation can be inter-preted as a way of participating in a national project. People have expectations,hopes and worries about the functioning of tissue economies – who should haveaccess to tissues and research information and what benefits and risks areembedded in different ways of producing biovalue. With international research,however, people’s views towards the forms of productivity which emerge out ofsample and information use becomes less clear and defined. The processes ofdonation contribute to a much larger project in which the economic and commercialrole played by populations (participants) becomes framed within the scientificresearch domain which is seen to benefit the whole of society in general and notjust the private sector. The construction of this policy model of the social signifi-cance of commercialization has played a significant role in the Finnish scienceand technology policy narrative for many years and will likely intensify as theneed for larger and more detailed information on populations increases in theyears to come. The ways in which international collaboration in biobanking willcontribute to this social project remain, however, somewhat unclear, leading toambiguity and uncertainty among some people.
Note
1. This question was preceded by a hypothetical case where respondents were asked what theywould do if a national biobank were to be set up in Finland. The question presented here wasalso preceded by several questions probing whether people would or would not donatesamples to such a biobank and their reasons for donating or not donating a sample to thebiobank (for translations of the questions see Hemminki et al. 2009, p. 77).
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