Group leader: Dr. Marja Häyrinen-Alestalo
Researchers: MSocSc. Karoliina Snell and MSocSc. Aaro Tupasela

Part of the research program ProACT funded by the Ministry of Trade and Industry (MTI) and the  National Technology Agency (Tekes)

The project  is composed of two PhD research projects. The object of Snell’s research was to explore and analyse the concept of social responsibility in relation to governance of science and technology by using new biotechnology in Finland as an example. The goals of the research were twofold: clarifying and systematically analysing the concept of social responsibility and creating knew knowledge about social interaction in governance of biotechnology. Tupasela’s research has focused on exploring the biomedical use of human tissue sample collections (biobanks) in Finland since the 1990s and its significance to science, technology and health policy. The research set out to analyse different conceptions of value that various actors, such as researchers, attach to tissue sample collection. The research has utilised the concepts of ‘tissue economies’ and ‘biovalue’ to explore differing conceptions of value, as well as the ways in which various actors seek to organize their research activities.

The project is based on earlier research of the research group that has been done on the commercialization of university research and the significance that new technologies, such as biotechnology have in this process. Social responsibility has become an actual topic in relation to corporations, researchers as well as technology governance. However, the concept of responsibility has not been analysed properly and therefore this research provides an important contribution to the discussion. The theoretical basis of research on biobanking can be said to bisect two general areas: the sociology of health and illness and science and technology studies. The research is directly connected to current international research on the social, ethical, legal and economic significance of human tissue collections.

The project was implemented through two related research projects which aim towards the completion of doctoral dissertations. The project has utilized qualitative research methods. A total of 52 interviews with experts in biotechnology and biomedicine have been conducted during the research project. In addition, numerous official documents related to biotechnology and biomedical research have been collected and analysed. A number of site visits were also conducted, such as visits to Finnish Genome Center, Biocity Turku and Wellcome Trust Centre for Human Genetics (Oxford, UK). Tupasela has conducted three case studies involving the biomedical use of human tissue sample collections.

    Results:

                                                   i.      Role of the public in biotechnology policy. The research has produced an analysis about how members of society are perceived in relation to biotechnology issues and decision-making. Whether the public is seen as citizens, consumers, human beings or a population affects the way in which the relationship between society and science and technology is understood. It also determines to whom the policies are responsible, and whether members of society are seen to have active or passive roles in policy-making. European Union documents place a great emphasis on citizen participation, while Finnish documents reveal a more passive idea of the citizen. Instead of being active participants, Finns are perceived as a population, an object of action that can be studied and controlled. Another way of seeing members of the public in EU and Finnish documents is as human beings. Although humans are active in relation to their own bodies, they do not participate in societal decision-making. Most importantly, in both EU and Finnish documents, consumers are given a more notable role than citizens. Even though consumers are perceived as active their actions are limited to the market – they do not have social responsibility for their actions or decision-making power.

                                                 ii.      Researchers’ responsibility. The responsibilities of researchers, in developing new biotechnology, have also been analysed. The most common view of researchers’ responsibility is a narrow interpretation: researchers are only responsible for the scientific quality and applying ethical research conduct. However, researchers are more and more involved in commercialisation of research and their roles and also responsibilities are expanding. With multiple roles and responsibilities researchers act as “enlightened experts”. They are trusted to handle many tasks and responsibilities because they are educated and good human beings. Therefore severe contradictions between roles and responsibilities are not recognised, even though commercialisation of research is seen to encompass problems.

                                              iii.      The formation and development of tissue economies in Finland. The efficient functioning of tissue economies is an important component of biomedical research. The research has shown how biomedical research in Finland has been able to utilize tissue sample collections and patient records very efficiently. The production of value, however, is increasingly linked with cooperation with the private sector, which increases the legal challenges associated with regulation. The case studies indicated that as the institutional size and complexity of research increases so does the pressure to commercialize research results. The pressure to commercialize in part is directly related to expectations within science policy.

                                              iv.      The public sector as customer and producer. The research indicated that the dual role of the public sector as a producer of innovations (R&D funding) and customer (counties) produces tensions in decision-making and highlights the lack of communication between different sectors. New innovations are often expensive which increases healthcare expenditure. In some cases, however, new innovations produce savings in the healthcare system as a whole, but as a whole the development of innovations has a different starting point than that of the needs of the customers. This finding supports the notion that different actors attribute varying notions of value to new innovations.

       The research on the social responsibility of actors contributes to the scientific discussion by providing a systematic analysis of the way in which the concept of social responsibility is utilized and by providing the notion of “responsibility chain” to describe the governance structure in biotechnology. The characterization of tissue economies in Finland has contributed new perspectives to the scientific discussion on the societal significance of the biomedical use of human tissue collections, as well as the challenges in defining biovalue.

      Understanding the social responsibility and the roles of different actors in biotechnology governance creates possibilities to for researchers, decision-makers as well as companies to function ethically and long-sightedly in a field filled by difficult societal questions.  Research on biobanking in Finland has indicated the impact that large international research projects have had on the pressure to commercialize research results. The research also indicated the importance of recognizing different forms of value in evaluating the societal importance of research results. The research has broadened the definition associated with the value of tissue sample collections from the perspective of the national innovation system, as well as identified the role of large multinational projects on the practices of research.

      Conclusions

      The results can be used in the development of biotechnology policy and innovation policy. Understanding the changing roles of researchers and citizens helps in developing sustainable political decisions. The research results can be utilized in decision-making related to biomedical research. In particular it can be utilized in the preparation of the new research legislation that the Ministry of Health and Social Affairs is preparing on biobanking. In addition the results can be utilized in evaluating the value of biomedical research results from a broader perspective.

      The research has produced a number of further research questions. In particular the research has indicated a need to continue research on the development and challenges of personalized medicine from the perspective of public healthcare, as well as by looking at the social responsibility of experts and companies.

      The project organized a seminar entitled “The Politics of Biobanking” (12.10.2005) to which biomedical researchers, members of ethics councils and funding organizations, as well as social scientists were invited.

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