Karoliina Snell | University of Helsinki (original) (raw)
Papers by Karoliina Snell
Humanities and Social Sciences Communications
Science and science policy are characterised by expectations. These expectations—as in the field ... more Science and science policy are characterised by expectations. These expectations—as in the field of biomedicine—may be related to describing novel findings, their use in curing diseases or their economic benefits. Previous research has shown that expectations are often communicated with the help of metaphors. In this article, we take a closer look at one metaphor—‘closing window of opportunity’—and examine how it frames discussions about policy and regulatory change in biomedicine through the lenses of urgency and national unity. A key component of the generative metaphor of a ‘closing window’ is the focus on limited time and a sense of urgency related to the creation of an enabling environment for biomedical research and innovations. We focus on two key elements of this framing: international competitiveness and national unity. Moreover, drawing on urgency seems to be a standard response to the changing environment, in which the actors need to continuously guide their actions in ne...
Big Data & Society, 2020
The Nordic countries aim to have a unique place within the European and global health data econom... more The Nordic countries aim to have a unique place within the European and global health data economy. They have extensive nationally maintained and centralized health data records, as well as numerous biobanks where data from individuals can be connected based on personal identification numbers. Much of this phenomenon can be attributed to the emergence and development of the Nordic welfare state, where Nordic countries sought to systematically collect large amounts of population data to guide decision making and improve the health and living conditions of the population. Recently, however, the so-called Nordic gold mine of data is being re-imagined in a wholly other context, where data and its ever-increasing logic of accumulation is seen as a driver for economic growth and private business development. This article explores the development of policies and strategies for health data economy in Denmark and Finland. We ask how nation states try to adjust and benefit from new pressures and opportunities to utilize their data resources in data markets. This raises questions of social sustainability in terms of states being producers, providers, and consumers of data. The data imaginaries related to emerging health data markets also provide insight into how a broad range of different data sources, ranging from hospital records and pharmacy prescriptions to biobank sample data, are brought together to enable "full-scale utilization" of health and welfare data.
Life Sciences, Society and Policy, 2019
According to surveys and opinion polls, citizens in Nordic welfare societies have positive, suppo... more According to surveys and opinion polls, citizens in Nordic welfare societies have positive, supportive attitudes towards medical research and biobanking. In Finland, it was expected that this would result in the active biobank participation of patients and citizens. Indeed, public support has been rhetorically utilised as a unique societal factor and advantage in the promotion of Finnish biobanks, underlining the potential Finland offers for the international biomedical enterprise. In this paper, we critically analyse the use of notions such as 'willing population' and 'engaged people' in the promotion and legitimation of biobanking. First, there is a seeming contradiction between positive attitudes and actual participation rates, as biobanks have faced unexpected challenges in participant recruitment during the first years of their operations. As a result, the concept of a willing population was redirected to problematise the necessity of informed consent. Second, we question whether it is even meaningful to assume the existence of an informed and engaged population with regard to biobanking. Therefore, we suggest that it is problematic to talk about a willing population at the same time as the relevance of the informed consent system is being questioned by biobank actors and policy makers. We analyse this tension in relation to existing data on Finnish people's attitudes, pointing out that positive, supportive views do not directly transform into high participation rates; nor do they justify the claims of policy makers and biobank proponents that people are willing to participate, when in fact surveys report that people know very little about biobanks.
New Genetics and Society, 2015
Social studies on biobanking have traditionally focused on public engagement, that is, engagement... more Social studies on biobanking have traditionally focused on public engagement, that is, engagement with donors, patients and the general public as an important factor of sustainability. In this article, we claim that, in order to fully understand the way biobanks work, it is necessary to pay attention to a number of other actors, which have an equal, if not greater, impact on their practices and strategies. This means taking a broadened approach to biobank engagement. By using data collected from interviews with different biobank experts based in five different countries (UK, Canada, Finland, Spain and Iceland), we identify seven communities, including the public, that emerge as relevant. Such relationships condition the way biobanks develop, act and plan. The discussion illustrates how the relationships with those seven communities are articulated. We conclude that there is a need for a broadened approach to biobank engagement in order to understand biobank sustainability.
Life Sciences, Society and Policy, 2015
This article poses the question of whether biobanking practices and standards are giving rise to ... more This article poses the question of whether biobanking practices and standards are giving rise to the construction of populations from which various biobanking initiatives increasingly draw on for legitimacy? We argue that although recent biobanking policies encourage various forms of engagement with publics to ensure legitimacy, different biobanks conceptualize their engagement strategies very differently. We suggest that biobanks undertake a broad range of different strategies with regard to engagement. We argue that these different approaches to engagement strategies are contributing to the construction of populations, whereby specific nationalities, communities, societies, patient groups and political systems become imbued or bio-objectified with particular characteristics, such as compliant, distant, positive, commercialized or authoritarian. This bio-objectification process is problematic in relation to policy aspirations ascribed to biobanking engagement since it gives rise to reified notions of different populations.
Scandinavian Journal of Public Health, 2009
Aims: To ascertain the attitudes towards the use of existing diagnostic and research samples, the... more Aims: To ascertain the attitudes towards the use of existing diagnostic and research samples, the setting up of a national biobank, and different types of informed consent among Finns. Method: A population survey of 2,400 randomly selected Finns aged 24—65 was conducted at the beginning of 2007. Results: A total of 1,195 responses (50%) were received after one reminder. Of the respondents, 83% said that they had little or no knowledge of what biobanks were. Despite this, 77% regarded the setting up of a national biobank in a positive light. One third (34%) would not attach any conditions on their consent, while 42% said that it was important to regain consent when the new study contains diverging steps. One third (30%) wanted consent to be regained for every new research project, and 44% would like to decide what type of research their samples would be used for if they were included in a national biobank. One third of both men and women approved of the use of their samples in resear...
Human Genetics, 2019
Biobank operations started officially in Finland in 2013 when the Biobank Act defining and regula... more Biobank operations started officially in Finland in 2013 when the Biobank Act defining and regulating biobank operations came into force. Since then, ten biobanks have been established and they have started to collect new prospective samples with broad consent. The main corpus of biobank samples, however, consists of approximately 10 million “legacy samples”. These are old diagnostic or research samples that were transferred to biobanks in accordance with the Biobank Act. The focus of this article is on ambiguities concerning these legacy samples and their transfer in terms of legality, human rights, autonomy, and social sustainability. We analyse the Finnish biobank operations in the context of international regulation, such as the European Convention of Human Rights, the Oviedo Convention, European Charter of Fundamental Rights, the GDPR, and EU Clinical Trials Regulation, and show that the practice of using legacy samples is at times problematic in relation to this regulatory fra...
Public Health Genomics, 2012
society, people have become accustomed to controlling personal data, which is particularly diffic... more society, people have become accustomed to controlling personal data, which is particularly difficult in relation to biobanks. They expressed strong concerns over the controllability of the goals and benefits of biobanks.
Genomics, Society and Policy, 2011
During the past decades, research on ethical, legal, and social aspects (ELSA) of biobanks sugges... more During the past decades, research on ethical, legal, and social aspects (ELSA) of biobanks suggested and analysed various ethically and socially justifiable frameworks for collecting, storing, and distributing human biological material and bioinformation. In this article, we identify three patterns of argument that differ in terms of shared core assumptions and similar conceptual as well as normative orientations. These discursive 'orders', which are related to specific macropolitical contexts, have significantly shaped contexts for biobank policymaking. The first order was characterised by high expectations of genomics and biobanking. Second order discourse partly took over the problems located in the first order, but reintroduced them into a justificatory framework that identified biobanks as public goods per se. The third order of ELSA expertise maintained a supportive attitude towards biobanking. However, regulation based on deductive reasoning became progressively complemented by ideals of participatory mechanisms and different methodologies of studying public perceptions. We conclude that this emphasis on learning processes and deliberation helps biobank communities to develop new concepts, methods and insights that will prove helpful in order to adapt to essentially undetermined futures of transnational innovation societies.
European Journal of Human Genetics, 2013
The focus of this article is on the relationship between research and education. The argument is ... more The focus of this article is on the relationship between research and education. The argument is that recent policy developments and the increasing emphasis on com-mercialisation and profitability of university activities weakens the connection of education and research. In this article, general characteristics of development of uni-versities and university policy in Finland are summarised. Main subjects of the analy-sis are three university departments that are situated in three different Finnish uni-versities. The concept of connection between research and education is explored and tested in these three cases. The relationship between research and education and its erosion is analysed with the help of four definitions of education’s research connection. The article shows that regardless of the definition, the connection be-tween research and education is becoming fragile as a result of practical, instrumen-tal and commercial aspirations of university activities. are facing a situa...
This article poses the question of whether biobanking practices and standards are giving rise to ... more This article poses the question of whether biobanking practices and standards are giving rise to the construction of populations from which various biobanking initiatives increasingly draw on for legitimacy? We argue that although recent biobanking policies encourage various forms of engagement with publics to ensure legitimacy, different biobanks conceptualize their engagement strategies very differently. We suggest that biobanks undertake a broad range of different strategies with regard to engagement. We argue that these different approaches to engagement strategies are contributing to the construction of populations, whereby specific nationalities, communities, societies, patient groups and political systems become imbued or bio-objectified with particular characteristics, such as compliant, distant, positive, commercialized or authoritarian. This bio-objectification process is problematic in relation to policy aspirations ascribed to biobanking engagement since it gives rise to...
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
Nordic welfare states have well institutionalised practises of gathering health and social wellbe... more Nordic welfare states have well institutionalised practises of gathering health and social wellbeing data from their citizens. The establishment of population registers coincided with the building of welfare state institutions and a social contract relying on solidarity. During the last decade, the significance of Nordic registers and health data has increased and they have become sources of economic value. Recent policies expect registers, health data and biobanks to attract international investments, making Nordic countries world-leaders in the global health data economy. In this article we question the conditions and boundaries of solidarity in the emerging data-driven health economy. We argue that the logics of welfare state and data-driven health economy create a paradox – the data economy is not possible without the welfare state data regime, but the logic of data-driven health economy contradicts the value bases of the welfare state data regime and therefore the justification...
This report presents research findings from eight focus groups that discussed genomic data, their... more This report presents research findings from eight focus groups that discussed genomic data, their diverse uses, the risks and expectations associated with the data, and the establishment of a national Genome Centre. The discussions were held in four locations in 2017. The participants were people in different age, population and occupational groups. The concept of genome was unknown to many of the group members, but after having learned about it, almost everyone considered genomics research and the use of genomic data in healthcare to be a good thing. It was thought that genomic data can help to achieve better health and promote the common good. However, the discussions did not support the view that Finns would only be happy to give their data unselfishly for any kinds of uses. Motives for supporting genomics research were linked, in particular, to people’s own experiences of hereditary diseases. It was hoped that genomics research would help — if not the participants personally — then at least others in the same situation. The group members also set conditions and restrictions for the use of genomic data. In particular, the commercial exploitation of the data raised doubts. The return of benefits from commercial activity to Finnish healthcare or public health was considered especially problematic. It was also feared that inequality would increase and the healthcare system would have insufficient resources for the use of genomic data.
This study presents a case of commercialization in an emerging business field. The subject of stu... more This study presents a case of commercialization in an emerging business field. The subject of study is Auria Biobank, the leading clinical biobank in Finland. The study depicts the development of the case organization and examines how the biobank seeks to establish business operations around its depository of tissue samples and patient records. This case study examines emerging of commercial activity associated with personalized medicine from the perspective of a biobank. The results of the study will present an evaluation of the challenges and opportunities a biobank faces when developing operations to utilize digitalized biobank data for commercial research and development (R&D) purposes.
Humanities and Social Sciences Communications
Science and science policy are characterised by expectations. These expectations—as in the field ... more Science and science policy are characterised by expectations. These expectations—as in the field of biomedicine—may be related to describing novel findings, their use in curing diseases or their economic benefits. Previous research has shown that expectations are often communicated with the help of metaphors. In this article, we take a closer look at one metaphor—‘closing window of opportunity’—and examine how it frames discussions about policy and regulatory change in biomedicine through the lenses of urgency and national unity. A key component of the generative metaphor of a ‘closing window’ is the focus on limited time and a sense of urgency related to the creation of an enabling environment for biomedical research and innovations. We focus on two key elements of this framing: international competitiveness and national unity. Moreover, drawing on urgency seems to be a standard response to the changing environment, in which the actors need to continuously guide their actions in ne...
Big Data & Society, 2020
The Nordic countries aim to have a unique place within the European and global health data econom... more The Nordic countries aim to have a unique place within the European and global health data economy. They have extensive nationally maintained and centralized health data records, as well as numerous biobanks where data from individuals can be connected based on personal identification numbers. Much of this phenomenon can be attributed to the emergence and development of the Nordic welfare state, where Nordic countries sought to systematically collect large amounts of population data to guide decision making and improve the health and living conditions of the population. Recently, however, the so-called Nordic gold mine of data is being re-imagined in a wholly other context, where data and its ever-increasing logic of accumulation is seen as a driver for economic growth and private business development. This article explores the development of policies and strategies for health data economy in Denmark and Finland. We ask how nation states try to adjust and benefit from new pressures and opportunities to utilize their data resources in data markets. This raises questions of social sustainability in terms of states being producers, providers, and consumers of data. The data imaginaries related to emerging health data markets also provide insight into how a broad range of different data sources, ranging from hospital records and pharmacy prescriptions to biobank sample data, are brought together to enable "full-scale utilization" of health and welfare data.
Life Sciences, Society and Policy, 2019
According to surveys and opinion polls, citizens in Nordic welfare societies have positive, suppo... more According to surveys and opinion polls, citizens in Nordic welfare societies have positive, supportive attitudes towards medical research and biobanking. In Finland, it was expected that this would result in the active biobank participation of patients and citizens. Indeed, public support has been rhetorically utilised as a unique societal factor and advantage in the promotion of Finnish biobanks, underlining the potential Finland offers for the international biomedical enterprise. In this paper, we critically analyse the use of notions such as 'willing population' and 'engaged people' in the promotion and legitimation of biobanking. First, there is a seeming contradiction between positive attitudes and actual participation rates, as biobanks have faced unexpected challenges in participant recruitment during the first years of their operations. As a result, the concept of a willing population was redirected to problematise the necessity of informed consent. Second, we question whether it is even meaningful to assume the existence of an informed and engaged population with regard to biobanking. Therefore, we suggest that it is problematic to talk about a willing population at the same time as the relevance of the informed consent system is being questioned by biobank actors and policy makers. We analyse this tension in relation to existing data on Finnish people's attitudes, pointing out that positive, supportive views do not directly transform into high participation rates; nor do they justify the claims of policy makers and biobank proponents that people are willing to participate, when in fact surveys report that people know very little about biobanks.
New Genetics and Society, 2015
Social studies on biobanking have traditionally focused on public engagement, that is, engagement... more Social studies on biobanking have traditionally focused on public engagement, that is, engagement with donors, patients and the general public as an important factor of sustainability. In this article, we claim that, in order to fully understand the way biobanks work, it is necessary to pay attention to a number of other actors, which have an equal, if not greater, impact on their practices and strategies. This means taking a broadened approach to biobank engagement. By using data collected from interviews with different biobank experts based in five different countries (UK, Canada, Finland, Spain and Iceland), we identify seven communities, including the public, that emerge as relevant. Such relationships condition the way biobanks develop, act and plan. The discussion illustrates how the relationships with those seven communities are articulated. We conclude that there is a need for a broadened approach to biobank engagement in order to understand biobank sustainability.
Life Sciences, Society and Policy, 2015
This article poses the question of whether biobanking practices and standards are giving rise to ... more This article poses the question of whether biobanking practices and standards are giving rise to the construction of populations from which various biobanking initiatives increasingly draw on for legitimacy? We argue that although recent biobanking policies encourage various forms of engagement with publics to ensure legitimacy, different biobanks conceptualize their engagement strategies very differently. We suggest that biobanks undertake a broad range of different strategies with regard to engagement. We argue that these different approaches to engagement strategies are contributing to the construction of populations, whereby specific nationalities, communities, societies, patient groups and political systems become imbued or bio-objectified with particular characteristics, such as compliant, distant, positive, commercialized or authoritarian. This bio-objectification process is problematic in relation to policy aspirations ascribed to biobanking engagement since it gives rise to reified notions of different populations.
Scandinavian Journal of Public Health, 2009
Aims: To ascertain the attitudes towards the use of existing diagnostic and research samples, the... more Aims: To ascertain the attitudes towards the use of existing diagnostic and research samples, the setting up of a national biobank, and different types of informed consent among Finns. Method: A population survey of 2,400 randomly selected Finns aged 24—65 was conducted at the beginning of 2007. Results: A total of 1,195 responses (50%) were received after one reminder. Of the respondents, 83% said that they had little or no knowledge of what biobanks were. Despite this, 77% regarded the setting up of a national biobank in a positive light. One third (34%) would not attach any conditions on their consent, while 42% said that it was important to regain consent when the new study contains diverging steps. One third (30%) wanted consent to be regained for every new research project, and 44% would like to decide what type of research their samples would be used for if they were included in a national biobank. One third of both men and women approved of the use of their samples in resear...
Human Genetics, 2019
Biobank operations started officially in Finland in 2013 when the Biobank Act defining and regula... more Biobank operations started officially in Finland in 2013 when the Biobank Act defining and regulating biobank operations came into force. Since then, ten biobanks have been established and they have started to collect new prospective samples with broad consent. The main corpus of biobank samples, however, consists of approximately 10 million “legacy samples”. These are old diagnostic or research samples that were transferred to biobanks in accordance with the Biobank Act. The focus of this article is on ambiguities concerning these legacy samples and their transfer in terms of legality, human rights, autonomy, and social sustainability. We analyse the Finnish biobank operations in the context of international regulation, such as the European Convention of Human Rights, the Oviedo Convention, European Charter of Fundamental Rights, the GDPR, and EU Clinical Trials Regulation, and show that the practice of using legacy samples is at times problematic in relation to this regulatory fra...
Public Health Genomics, 2012
society, people have become accustomed to controlling personal data, which is particularly diffic... more society, people have become accustomed to controlling personal data, which is particularly difficult in relation to biobanks. They expressed strong concerns over the controllability of the goals and benefits of biobanks.
Genomics, Society and Policy, 2011
During the past decades, research on ethical, legal, and social aspects (ELSA) of biobanks sugges... more During the past decades, research on ethical, legal, and social aspects (ELSA) of biobanks suggested and analysed various ethically and socially justifiable frameworks for collecting, storing, and distributing human biological material and bioinformation. In this article, we identify three patterns of argument that differ in terms of shared core assumptions and similar conceptual as well as normative orientations. These discursive 'orders', which are related to specific macropolitical contexts, have significantly shaped contexts for biobank policymaking. The first order was characterised by high expectations of genomics and biobanking. Second order discourse partly took over the problems located in the first order, but reintroduced them into a justificatory framework that identified biobanks as public goods per se. The third order of ELSA expertise maintained a supportive attitude towards biobanking. However, regulation based on deductive reasoning became progressively complemented by ideals of participatory mechanisms and different methodologies of studying public perceptions. We conclude that this emphasis on learning processes and deliberation helps biobank communities to develop new concepts, methods and insights that will prove helpful in order to adapt to essentially undetermined futures of transnational innovation societies.
European Journal of Human Genetics, 2013
The focus of this article is on the relationship between research and education. The argument is ... more The focus of this article is on the relationship between research and education. The argument is that recent policy developments and the increasing emphasis on com-mercialisation and profitability of university activities weakens the connection of education and research. In this article, general characteristics of development of uni-versities and university policy in Finland are summarised. Main subjects of the analy-sis are three university departments that are situated in three different Finnish uni-versities. The concept of connection between research and education is explored and tested in these three cases. The relationship between research and education and its erosion is analysed with the help of four definitions of education’s research connection. The article shows that regardless of the definition, the connection be-tween research and education is becoming fragile as a result of practical, instrumen-tal and commercial aspirations of university activities. are facing a situa...
This article poses the question of whether biobanking practices and standards are giving rise to ... more This article poses the question of whether biobanking practices and standards are giving rise to the construction of populations from which various biobanking initiatives increasingly draw on for legitimacy? We argue that although recent biobanking policies encourage various forms of engagement with publics to ensure legitimacy, different biobanks conceptualize their engagement strategies very differently. We suggest that biobanks undertake a broad range of different strategies with regard to engagement. We argue that these different approaches to engagement strategies are contributing to the construction of populations, whereby specific nationalities, communities, societies, patient groups and political systems become imbued or bio-objectified with particular characteristics, such as compliant, distant, positive, commercialized or authoritarian. This bio-objectification process is problematic in relation to policy aspirations ascribed to biobanking engagement since it gives rise to...
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
Nordic welfare states have well institutionalised practises of gathering health and social wellbe... more Nordic welfare states have well institutionalised practises of gathering health and social wellbeing data from their citizens. The establishment of population registers coincided with the building of welfare state institutions and a social contract relying on solidarity. During the last decade, the significance of Nordic registers and health data has increased and they have become sources of economic value. Recent policies expect registers, health data and biobanks to attract international investments, making Nordic countries world-leaders in the global health data economy. In this article we question the conditions and boundaries of solidarity in the emerging data-driven health economy. We argue that the logics of welfare state and data-driven health economy create a paradox – the data economy is not possible without the welfare state data regime, but the logic of data-driven health economy contradicts the value bases of the welfare state data regime and therefore the justification...
This report presents research findings from eight focus groups that discussed genomic data, their... more This report presents research findings from eight focus groups that discussed genomic data, their diverse uses, the risks and expectations associated with the data, and the establishment of a national Genome Centre. The discussions were held in four locations in 2017. The participants were people in different age, population and occupational groups. The concept of genome was unknown to many of the group members, but after having learned about it, almost everyone considered genomics research and the use of genomic data in healthcare to be a good thing. It was thought that genomic data can help to achieve better health and promote the common good. However, the discussions did not support the view that Finns would only be happy to give their data unselfishly for any kinds of uses. Motives for supporting genomics research were linked, in particular, to people’s own experiences of hereditary diseases. It was hoped that genomics research would help — if not the participants personally — then at least others in the same situation. The group members also set conditions and restrictions for the use of genomic data. In particular, the commercial exploitation of the data raised doubts. The return of benefits from commercial activity to Finnish healthcare or public health was considered especially problematic. It was also feared that inequality would increase and the healthcare system would have insufficient resources for the use of genomic data.
This study presents a case of commercialization in an emerging business field. The subject of stu... more This study presents a case of commercialization in an emerging business field. The subject of study is Auria Biobank, the leading clinical biobank in Finland. The study depicts the development of the case organization and examines how the biobank seeks to establish business operations around its depository of tissue samples and patient records. This case study examines emerging of commercial activity associated with personalized medicine from the perspective of a biobank. The results of the study will present an evaluation of the challenges and opportunities a biobank faces when developing operations to utilize digitalized biobank data for commercial research and development (R&D) purposes.