National interests and international collaboration: tensions and ambiguity among Finns towards usages of tissue samples

Abstract

Recent trends in biobanking indicate that the practices associated with the collection and use of human tissue samples and related health information are increasingly becoming premised on networks of biobanks. These networks and partnerships often involve international collaborations, as well as public–private partnerships. This article reports on the results of a study of people's attitudes towards biobanking and the biomedical use of tissue samples in Finland. Three approaches were used to study these attitudes: a population-based survey, focus group interviews among members of patient organizations and short interviews with research participants. In particular, we look at the attitudes of respondents in these three studies towards the use of tissue samples and use them as a catalyst to discuss two dimensions of biomedical research: public/private and domestic/international. Our discussion highlights how notions of value related to the use of tissue samples vary and provide contrasting perspectives and ambiguity that people may have towards various types of research partnerships and the benefits that may arise from them.

Keywords:

• biobanks
• nationalism
• donation
• participation
• tissue samples
• tissue economies

Introduction

During the last decade the development of biobanking around the world has garnered increasing attention both scientifically and politically (Hansson and Levine 2003, Knoppers 2003, Tutton and Corrigan 2004, Gottweis and Petersen 2008). Although many biobanking projects have drawn on the rhetoric of national identity, such as with UK Biobank and deCode in Iceland (Busby and Martin 2006), and promoting the development of bioscience is framed as a means to boost national competitiveness (Tupasela 2007, 2008, Snell 2009), there has emerged a need to increasingly develop networks and partnerships between various actors in this field (Asslaber and Zatloukal 2007, BBMRI 2008, Mayrhofer and Prainsack 2008, Gottweis and Lauss 2010). These networks and partnerships are often international and comprise actors from both the public and private sectors. Scientifically this trend is being driven by the need to validate findings in more than one population (Kere 2007), as well as the realization that increasingly larger population sets are needed in order to gain statistical significance concerning the causes of multi-factorial diseases (M'charek 2005). Politically this trend has been driven by a need to consolidate scarce resources and develop critical mass in the field of biomedical sciences (European Commission 2002a), as well as the hopes and expectations that are associated with the biomedical sciences (Helén 2004).

In relation to science and technology policies in Europe a trend has emerged where policy makers seek to respond more flexibly to the demands of society and develop a more robust and responsible system of communication with the public (European Commission 2002b, Snell 2009). This communication is an integral part of legitimizing policy actions in research fields which are seen as contentious (Hansen 2006). The development of the field of biobanking has also produced a plethora of studies looking into the opinions and attitudes of the public towards such practices (Stegmayr and Asplund 2002, Hoeyer et al. 2004, Kettis-Lindblad et al. 2006, Haddow et al. 2007, Tupasela et al. 2010).

In this article we explore diverging public perceptions and ambivalence towards the use of tissue sample collections among Finns. We examine divergences in the way people relate to the use of tissue sample collections by the public or private sectors, and in a domestic or an international context. We discuss these findings in relation to the notions of value and significance that people attach to donated samples (cf. Waldby and Mitchell 2006). Within this theoretical context the use of tissues is seen to constitute a political economy where the productivity of tissues intersects with the productivity of markets. Given this starting point, we argue that the productivity of tissues and the markets that they constitute are related to the ways in which the sources of these samples (donors) view the way in which markets operate or ought to operate in relation to the use of the samples and the ways in which the use of donated samples are seen as legitimate and acceptable in these markets. Following previous studies on public perceptions towards the biomedical use of tissue sample collections (Haddow et al. 2007), we argue that the notion of a singular public is problematic (Hoeyer 2010). Instead, the relationship between public perceptions and issues related to biobanking is mediated by the context in which biobanking is taking place in various countries and the ways in which the participants in questionnaires and interviews are positioned and interested in the issues (cf. Gottweis et al. 2011). In this sense biobanking is no exception.

A central aspect of tissue use, however, can be said to be rooted in an ambiguity and uncertainty that lies in the ways tissue sample collections and their related information become productive (cf. Tupasela 2011). We therefore examine the perceptions of Finns towards the use of tissue samples in public and private research and by domestic and international companies to create a more nuanced picture of the relationship between the sources of tissue samples, the expected productivity (the creation of various forms of value), and the consumers of the end products. We see this as having particularly important policy implications given the role that biobanks are seen to have in the future and the fact that tissues and their associated information are increasingly deployed in international networks.

In Finland, the notion of the national innovation system has been prevalent in relation to arguments set forth to support biobanking (Tupasela 2008). Increasingly, however, the nature of biobanking goes beyond national borders and it is becoming more difficult to define the ways in which tissues and information become productive in a public and/or a national way. In this sense, the globalization of tissue economies also produces an increased level of ambiguity among the population as to the local significance related to the global circulation of tissues and information. We see this contributing to what Sunder Rajan has termed the analysis of the production biocapital which looks at “multiple forms of currency, such as money, information, and biological material, all simultaneously dependent on one 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 in biomedical research forms, therefore, an important circuit through which tissue economies and the production of value (biocapital) operate. A traditional tension and focus of study within the production of scientific knowledge has looked at the relationship between public and private research where the established ethos of science has been challenged by new systems of public–private interaction within academia (Merton 1973, Owen-Smith and Powell 2002). This relationship is important in the development of tissue economies and the production of value since it provides new avenues and forms of circulation through which tissues and 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 people have in relation to the use of samples by domestic and international companies in contrast to use for national public research since these differences highlight the challenges which policy makers face. People's differing views, understandings and ambiguities related to tissue sample collections and related information in international research partnerships have an important impact on the acceptability of biobanking generally and are thus of great policy relevance (Gaskell and Gottweis 2011). This dimension adds another layer to the traditional public/private question by provoking donors to ask about the significance, potential and risks involved in tissue samples being used beyond one's national borders. Although international cooperation in scientific research is hardly new, the partnerships and networks being developed within biobanking give a heightened urgency to pose these questions in more detail as they relate to the donation and use of human tissue samples.

Finland, like many other countries, has been collecting human tissue samples and related lifestyle and health information for medical research for decades. In relation to the national character of innovation policies the relationship between international collaboration and the use of national tissue sample collections is not a straightforward one. On the one hand, tissue samples and related health and lifestyle information are collected and stored within the national (local) setting. On the other hand, biomedical research is premised on international cooperation where the flows of information and material have become an important aspect of the development of tissue economies (Waldby 2002, Tupasela 2008).

Herein lies a tension between innovation policies and biomedical research in relation to tissue samples and biobanks. On the one hand research and development funding is seen to play an important role in bolstering national economies and public health, while at the same time biomedical research is increasingly international in nature, some might even say that it always has been international in nature. This process has been accompanied by a need to mediate diverging notions relating to the biomedical collection, storage and use of human tissue samples and health information in Finland, as well as in many other European countries.

Research materials and methods

The study examined people's attitudes using multiple methods and target groups to probe the same questions. These methods combined both qualitative and quantitative approaches which were organized in a sequential fashion in order to facilitate the use of inputs from the previous results for the development and design of the following study (Ivankova et al. 2006). Previous studies on attitudes towards the use of biomedical tissue samples have drawn on a host of different methodological approaches, including population-based surveys (Hoeyer et al. 2004, Hemminki et 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 questions the epistemic foundations of combining methodological approaches (Lincoln and Guba 1985, Kelle 2001) we consider the use of multiple methods to yield important insight into research areas by increasing scope, depth and consistency (cf. Godard et al. 2007, Morgan 2007). We use these different methods as catalysts for discussion and exploration of attitudes, but do not assume them to be comparable in a strict sense. Such approaches, nonetheless, bring forth vital information relating to the various dimensions of public opinion and decision making.

In this article we use results from a population-based survey, focus group interviews among patient organization members, and research participant interviews to serve as a catalyst to discuss differences concerning people's views towards the use of tissue samples by domestic and foreign companies, as well as public and private research. Although many of the opinions in the other questions concurred with each other, our questions relating to the domestic/international and public/private nature of sample use elicited the greatest differences among respondents. The distinctions (dichotomies) that were studied were created by us in the survey and interviews. The differences in responses between various methods, however, indicate that people think through the issues in different ways depending on their background. 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 has also been argued that commonalities between answers using different methodologies can be misinterpreted as a form of mutual validation (Flick 1992). We therefore conclude that the exploration of differences between answers to a question merits the same amount of attention as where there is concurrence between responses and further argue that the study of such differences yields important information in relation to combining mixed methods research results.

The first study that was conducted was the population-based survey, which was sent to 2400 Finns aged 24–65 and was conducted at the beginning of 2007 (Sihvo et al. 2007). The randomized sample was composed of Finnish-speaking people living on mainland Finland to whom a postal survey questionnaire was sent. The sampling source was the Finnish Population Register Centre, which maintains a complete listing of people living in Finland. Those people who did not answer the first mailing received a reminder one month later. The final response rate was 50% (n = 1195). The questionnaire was composed of 28 questions, the majority of which were multiple choice questions. The themes of the questionnaire covered levels of knowledge, informed consent in medical research, attitudes towards the use of existing diagnostic and research samples, and attitudes towards the setting up of a national biobank. Respondents were asked about their views in relation to diagnostic and research samples since Finnish law on the biomedical use of tissues currently makes a distinction between them and the possibilities of their use. The questionnaire development process also took into account earlier studies and literature on issues related to biobanking (Hoeyer et al. 2004, Kettis-Lindblad et al. 2006). Some questions were preceded by an explanation of the technical terms, or a practical scenario was used. Here we use results from two questions relating to the attitudes of Finns towards the use of diagnostic and research tissue samples by domestic and foreign companies.

The second study was comprised of four focus group interviews among members of 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 to receive information and peer support. With a total of 27 participants, the groups were composed of 6–10 people aged 36–71 in three different locations in Finland. The majority of the participants were women (20). Most of the participants were recruited through Suomen Potilasliitto (Finland's Patient Union) which is an umbrella organization representing a number of smaller Finnish patient groups. Focus group interviews have been used to study the attitudes of lay people in relation to a multitude of issues relating to biobanking (Tutton 2007, Lemke et 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 attitudes towards biobanks and the biomedical use of tissue samples. We used a semi-structured interview script that had been developed based on the questionnaire and especially those questions which we had identified as requiring further investigation. 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 and followed 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 through patient 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 a patient. We feel, however, that the use of members of patient organizations was important since many of them had some idea of the questions and problems that exist within and in relation to biobanking and biomedical research (cf. Haddow et al. 2007). In many cases the participants were able to reflect directly on questions in relation to personal experiences. It can also be argued that patient organizations have become important players within the field of biomedical research (Novas 2007, Mayrhofer 2008). In Finland however, according to our interviews, patient organizations' role is more marginal. Focus groups composed of patients or relatives of patients reveal opinions of a special and relevant group that may be discarded if only surveys of the general population are used as a source of public opinion. This can also be seen the other way round. Patients are often referred to as “lay experts” who are able to contemplate medical issues because of their personal experience. Biomedicine and biobanks have however implications that stretch over the medical realm and need to be evaluated by people with fewer ties to the medical sector (see also Goven 2008). Even though patients can be considered as experts in their disease from the personal perspective it is important to note that hardly any of the participants had previous knowledge on biobanks.

The third study we conducted was comprised of data collected through research participant interviews (face-to-face interviews). These 23 short interviews were carried out in the context of a national diabetes prevention research conducted by the National Health Institute in 2007, whose participants were selected through a randomized population sample. Interviews were carried out after the research participants had taken part in a glucose tolerance test, a medical exam, and had filled in a number of questionnaires concerning their health and lifestyle information. The interviewees (aged 45–71) were presented with 10 open questions about informed consent and other possible uses of their tissue samples.

Although the answering of a questionnaire, participation in a focus group and face-to-face interviews represent very different processes and “publics” in regard to the dynamics of opinion development and the target groups are also comprised differently, we believe that comparing and contrasting these sources of opinion helps to highlight and identify differences in people's attitudes, as well as bring forth how different methodologies of opinion gathering bear an influence on the opinions. In the next sections we present our empirical findings as they relate to opinions concerning the domestic/international dimension of research and then look at the public/private dimensions that we enquired about in our research.

Table 1.  For what purposes could samples stored in the biobank be used?

	Yes	No	Uncertain	I would not give my sample to a biobank	TOTAL % (n)
Medical research in public institutions (such as universities and public hospitals)	78	6	14	2	100 (1158)
International medical research	49	16	31	3	100 (1127)
For the development of medicines and treatments in Finnish pharmaceutical and biotech firms	78	4	16	2	100 (1162)
For the development of medicines and treatments in international firms	42	20	33	5	100 (1118)

Nationalism in research

Biobanks, especially large national biobanks, as well as DNA are often characterized by reference to nation states and contextualized by reference to national history, welfare and health care (cf. Rabinow 1999, Busby and Martin 2006, Tamminen 2010). They have also become inextricably linked to wealth creation and notions of national pride and modernization (Sunder Rajan 2006, Mitchell and Waldby 2010). In a similar vein, the results of the population survey that we conducted indicate a kind of national protectionism. Respondents were more willing to have their samples used by domestic firms as opposed to international firms (Table 1). The willingness of respondents to allow samples to be used by domestic companies (78%) for the development of medicines and treatments was significantly 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 in relation 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 this perspective.

In relation to concerns about biobanking, 70% of respondents were either very concerned or concerned that their samples would be sold overseas, whereas only 34% were very concerned or concerned that their employer would gain access to them and 45% were very concerned or concerned that insurance companies would have access to them. In this context, once again, the issue of samples going overseas, as opposed to ending up in domestic use, raised more concerns among the population survey respondents. This reflects a protectionist stance in terms of labor relations, but within a setting where the field of biotechnology and its available resources serve as the matrix in which jobs and wealth are created. This political stance is quite common within the politico-economic rhetoric which has emerged in relation to the knowledge-based bio-economy.

Although the distinction between domestic and international firms is problematic to make since biomedical research is international in nature and is highly dependent on international networks and collaboration it is, nonetheless, in this context that we found the results of the questionnaire comparative to the results of the focus group interviews interesting in light of this dichotomy. The results in the questionnaire provide one snapshot of people's perceptions within the Finnish context towards the use of samples domestically and internationally in companies, one that is also uncertain in that a high number of respondents noted that they were uncertain of their position in relation to whether they would allow their samples to be used by international companies.

The perspective regarding international vs. domestic research that was expressed by the patient organization members in the focus group interviews was quite different however. Within the focus group discussions participants were very aware of the fact that domestic and international business and research were very much intertwined. Many noted that rarely is research purely domestic and that sharing knowledge internationally was preferable. The participants also noted that there were very few companies that were strictly national or domestic in nature and that for the most part companies are international and in many parts owned internationally. Some noted that they trusted Finnish research more than international research; however, most noted that the international research field was seen to be further ahead than the Finnish research field alone.

As one participant noted in relation to the distinction between domestic and international companies,

Today the situation is such that there are very few purely domestic companies. Most companies are owned by foreign investors so it's very difficult to start to make such a distinction.

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 dimension anymore when even researchers don't stay within the Finnish borders, but instead head off to the US or Japan if they are interested.

The dichotomy that was presented in the questionnaire and to the focus groups was brought into question by the patient organization members. In the survey, research by international companies was framed not as cooperation, but as a possibility for foreign companies to use tissues in Finnish biobanks. Patient organization members questioned the degree to which it was possible to make this distinction not only in relation to companies, but also in relation to the way researchers are able to move around from one country to another. The artificial division was also questioned by many 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 characters out 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 political context as is indicated in the following interview excerpt where a participant talks about the relevance of where research is conducted:

There are differences. If the research is done in Germany or France and it receives more funding due to the political weight of those countries, as is taking place in a number of research fields in biomedicine, then I support it … doing the research in Germany or France. President Chirac is such a bold person that he can get from the EU 300 million euros when us Finns can only get 10 million euros, then it's in all our benefit that it's done in France.

Another member in a focus group reflected on the international dimension of research from a different perspective, noting how international research can on the one hand be detrimental to some, while beneficial to others:

Then you have these cases where they take samples and collect data in developing countries, but the benefits are primarily for us [western people]. So it's a problem if the benefits go to a group of people who are already better off; the benefits should be distributed more evenly, at least the medications. People don't have money for HIV medications or vaccines for children.

As part of the focus groups, we asked the participants to place certain uses of biobank material into coordinates according to their risks and acceptance. Both domestic and international research was regarded as very acceptable by patient organization members, yet international research was accredited with more risks. This illuminates well the opinions about domestic/international research in the focus groups but also in our two other types of data. Unwillingness to give samples to international companies is not necessarily related to negative opinions, but reflects the uncertainties and risks that are associated with non-domestic research.

In the face-to-face interviews of research participants, the interviewees were asked to state whether they should be asked for a new permission if their samples and data were to be used by a Finnish company and by a foreign company for medical research. Most were willing to give their samples and data for the use of Finnish companies, but with foreign companies, most wanted to be asked for new consent. In the follow-up question, the interviewees were uncertain whether they would give permission if asked. It was said to be dependent on the country, the company, the purpose, etc. The respondents did not have a negative attitude towards international companies, but were ambivalent and would have wanted more 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 about the public/private distinction in research, at least domestically, as opposed to the domestic/international dimension, since 78% of respondents were willing to allow samples to be used by domestic companies; the same percentage of people would allow this in public research institutes (78%, n = 1162). This position was also supported and reflected in the patient organization focus group interviews conducted in Finland. As one respondent noted in relation to whether there was a difference 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 the commercial sector it's the same. It's just as useful as research done in public institutions.

Another participant noted that it made no difference whether it was the public or private 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 commercial matter. So in this sense you need to get it to work. In England there have been some strange cases where the university can't do any type of business, so you have to have some type of company that will exploit the result. So I don't see any difference if it is a company or the public sector that exploits it as long as it goes towards a common 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 in relation to who was doing the research and who was exploiting (commercializing) it in the end. For many participants in the patient organizations what was of importance was the end result, meaning that what they were interested in was that somebody was able to develop a treatment or a cure to a given ailment or disease. In this sense, the respondents in the patient organization interviews were more reflexive and pragmatic in terms of their approach to the use of research results. On the other hand their position as patients contains interest that can differ from the people in our population sample and research participant interviews who might not have similarly intensive experiences with diseases (Goven 2008).

I think it is the same, despite the fact that the research is done for commercial purposes 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 the end so much cooperation takes place between the two and actors move from one sector to the other.

The distinctions that are often drawn between public and private actors in relation to research were questioned among the participants in the focus group interviews. Once again, the patient organization members emphasized the end results as being the most important factor that should be considered as opposed to the means or context in which the research was conducted. Many in the focus groups also had a very pragmatic approach to commercialization, noting that it is always necessary in order to take a medication or treatment to market. Furthermore, in many cases they noted that the benefit of using samples would accrue to future generations and not themselves:

I would say that if there is benefit from these samples that I have given, to developing a 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 organization members were also critical in some instances. One participant noted:

I was really angry when I received in the mail a pamphlet from a pharmaceutical company. The questions were silly and if you answered them in a certain way then the result was that you should contact your physician immediately and ask for their medication.

Another patient organization member noted that she had had some problematic experiences with participating in a public research exercise, but that this did not deter her from participating:

I had an interesting discussion with the research professor the other day since my blood is internationally in great demand. There's this center that distributes this blood, sells it, to thousands of research groups around the world and we discussed whether he should have informed me about this. […] Of course I gave permission for my blood to be used in his project, but now it's globally available. I'd like to know where it's being used, I don't want to be a means to an end. […] They never asked me if they could give it to others. […] They should have an obligation to inform me, not just that I have a right to participate. […] Despite this I'm still among the first to participate in research.

Despite bad experiences with companies and public research organizations, patient organization members were still able to highlight positive aspects related to participation.

In the research participant interviews public research was considered to be more trustworthy. The respondents were more willing to give their samples to be used without re-consent by another public research group than commercial researchers.

I don't trust the pharmaceutical industry as much as heath care researchers and health care.

No [new consent needed], if it's related to public health, but yes if it's a pharmaceutical company, and its business for own purposes.

The empirical data suggests that there are differences in the way people relate to public vs. private research, but that at least in Finland the domestic private companies 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 which they are asked to consider various issues. Interest groups, such as members of patient organizations, may have very different perspectives from those of people who have had no or very little contact with the medical profession, through either their own illness or that of a family member. Patients have also greater interests at stake – they hope for new cures and treatments in a more concrete way. In this sense people may take diverse positions with regard to the production of scientific knowledge and thus biovalue. This may also reflect the ways in which they understand the significance of their donation as a more general component in the development of scientific research as opposed to a more concrete contribution to the development of medications and treatments for a particular disease. We do not consider there to be a singular public, but rather a multitude of diverging opinions concerning biobanking (cf. Hoeyer 2010). Despite concerns, such as samples being sold overseas or having greater trust in domestic companies among one sample population, other populations might see the situation in a different light depending on the criteria that are used to ascribe value and meaning to activities.

Some commentators have related this trend to symbols of national pride and modernization (Sunder Rajan 2006). It can also, however, be directly related to the ways in which actors see and calculate the production of biovalue in that the collection and use of tissues are related to competition and markets. People are also not sure of the ways in which their material will become productive and the ways in which they will be used. This represents a type of logic where the productivity of samples is seen in terms of some form of benefit. Although there may not be direct personal benefit, there is an underlying assumption as to what kinds of benefit vs. harm will accrue to Finns through such collaboration. The circulation of materials and money, therefore, do not always coincide with the ways in which research participants or the public perceive or would like these circuits of materials to operate, yet at the same time this circulation is in many ways dependent on their approval.

Within the focus groups, the consideration of the amount of investment internationally into biomedical research highlights a number of issues in relation to the domestic/international dichotomy. First, the amount of research funding that larger countries are able to gather around certain research areas is noted as an important factor. This reflects an understanding by participants of the influence of investments into the operation of tissue economies and the benefits that can be gained from them.

Second, the idea that research and research materials, such as tissue sample collections, should be kept within national borders reflects an innovation policy perspective on the importance placed on research and national health care. The patient group members raised an alternative view to this position namely that in relation to the perspective of the patient, the more funding that certain research receives, the better it is in terms of the final result of finding treatments or cures for diseases and ailments. In this sense the political dimension is replaced by a patient-centered view of research (Novas 2007). This by no means de-politicizes the use of tissue sample collections, but rather introduces an alternative view of the ways in which resources should be used.

Third, this perspective is more in line with international guidelines on the use and sharing of tissue sample collections and related information in relation to biomedical research (BBMRI 2008). The need to bring together disparate resources to gain better results was seen as important.

Knowledge production and the circulation of tissue samples and related information have different meaning for different people depending on the ways in which they evaluate the significance of the biovalue that is being produced within these processes. This may also explain some of the differences that our study produced in comparison to Critchley (2008) who has noted that people are skeptical 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 determining people'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 and emotional values as opposed to blood samples and health information (cf. Tober 2001, p. 157). The productivity of tissues and markets is therefore linked with the diverging notions of biovalue that people may have since acceptability and support from the population are crucial for the legitimation and operation of tissue economies. At the same time, however, tissue donation in Finland is very heavily imbued with nationalistic implications drawn from science, technology and innovation policies despite the international character of research. This also highlights the tensions and ambiguities that may exist among the population in relation to the collection and use of tissue samples in that some groups value international use far more than others and do not make distinctions regarding by whom or where scientific knowledge is produced and samples circulated, but rather focus on the output and its significance to their lives and health; others are more skeptical and unsure of the processes of knowledge production that rely on tissue samples and related health information.

The use of samples in public, private or international collaborations carries with it different forms of meaning for different people, but also produces various forms of ambiguity as to the ways in which samples and information may be productive and useful. As some studies have noted this may be because people are uncertain of the future use of the samples (Treweek et al. 2009, Snell et al. 2012) or they may be uncomfortable with the commercial use of the samples (Haddow et al. 2007, Axler et al. 2008). Similar critical attitudes have been found in other focus group interviews among the Finnish public. The commercialization of biomedical research and involvement of the pharmaceutical industry created many worries about research aims and distribution of benefits (Snell et al. 2012). This difference can be explained first of all by less concrete interests. Patients may have higher personal expectations for cures than the healthy population. Secondly, as concerns our face-to-face interviews, the research participants had just participated in a public research project so trust in respect of public research can be expected. Participating in a national publicly funded research project also produces more direct expectations 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 support research and participate has been shown to be dependent on research sponsorship. Similarly, Critchley (2008) has argued that people's trust is greater in publicly funded research due to a higher level of trust in publicly, as opposed to privately funded scientists. The dichotomy between public and private has, however, been problematic for a long time due to the blurring of the boundary between publicly and privately sponsored research making the lay public's distinction between the two categories problematic (Chalmers and Nicol 2004). Our study indicated, however, that in the survey people had the same level of trust in domestic companies as they did in public research institutions. In the focus group interviews, however, participants noted that international cooperation might bring with it more benefits than domestic research, public or private.

The use of national innovation policy rhetoric in Finland has produced to a certain degree a willingness on behalf of research participants to contribute towards this form of national productivity. At the same time, however, people's understanding of the ways in which tissues and information become productive and useful in the international context remains to a certain degree ambiguous and uncertain, which was highlighted by a patient organization member noting the benefits that western people gain from exploitation of research in the third world.

Although national sentiments may appear to play an essential or ambiguous role in people's perceptions of tissue use, it is important to recognize that biomedical research is very much entrenched within international collaborative networks. The overemphasis of the national perspective in national science, technology and innovation policies may very well be misleading to the public at large and ultimately cause confusion as to the ways in which medical research operates. At the same time, however, we recognize the “work” that such policy rhetoric performs in constructing altruism and gift-giving as a secondary commodity which has value in itself for the nation and its scientific research program. The same applies to the public/private dichotomy. As research projects are often framed as means to promote national health and welfare and the donation of samples and information takes places usually in the context of public health care, the role of the private sector is not clear for the public.

Contributing to biomedical research and biobanks through donation can be interpreted as a way of participating in a national project. People have expectations, hopes and worries about the functioning of tissue economies – who should have access to tissues and research information and what benefits and risks are embedded in different ways of producing biovalue. With international research, however, people's views towards the forms of productivity which emerge out of sample and information use becomes less clear and defined. The processes of donation contribute to a much larger project in which the economic and commercial role played by populations (participants) becomes framed within the scientific research domain which is seen to benefit the whole of society in general and not just the private sector. The construction of this policy model of the social significance of commercialization has played a significant role in the Finnish science and technology policy narrative for many years and will likely intensify as the need for larger and more detailed information on populations increases in the years to come. The ways in which international collaboration in biobanking will contribute to this social project remain, however, somewhat unclear, leading to ambiguity and uncertainty among some people.

Notes

This question was preceded by a hypothetical case where respondents were asked what they would do if a national biobank were to be set up in Finland. The question presented here was also preceded by several questions probing whether people would or would not donate samples to such a biobank and their reasons for donating or not donating a sample to the biobank (for translations of the questions see Hemminki et al. 2009, p. 77).