Aaro Tupasela

University of Helsinki | HY · Department of Sociology

Genome Finland tells a story of genomic medicine in Finland from the study of rare Finnish diseases in the 1960s and 1970s to the implementation of personalized medicine in the 2020s. The main focus is on the 21st century – the period after the Human Genome Project – and on the establishment of new infrastructures to support genomic medicine, such...

Despite increased interest in the development of smart cities and urban spaces that cater to the needs of their inhabitants, there is a significant lack of information and experience when it comes to working with older people. URBANAGE is a European H2020 project focused on supporting urban planners and policymakers in the decision-making process f...

This multidisciplinary volume reflects the shifting experiences and framings of Finnishness and its relation to race and coloniality. The authors centre their investigations on whiteness and unravel the cultural myth of a normative Finnish (white) ethnicity. Rather than presenting a unified definition for whiteness, the book gives space to the diff...

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 h...

Population branding gives the Nordic States a new way to transform both their citizens and their comprehensive welfare state records into desirable assets on the global innovation market. With forensic precision and scholarly depth, Tupasela calibrates the similarities and differences between the consumer data strategies of the FANGs (Facebook, Ama...

Here, Tupasela explores the ways branding draws from historico-cultural narratives of origin, authenticity, and geographical linkage, meanwhile playing an increasingly important role in marketing populations as new types of scientific products. Using the notions of heritage, identity, geolocation, and scientific recognition, he argues that genetics...

The chapter begins by presenting the discourse that describes Nordic biobanks and health care data resources as the “Nordic gold mine,” then moves on to examine marketing in two organizations in Denmark and Finland—Healthcare Denmark and Sitra—to elucidate how professional branding practices are employed to market them. The prominence of biobanking...

In this chapter, the author addresses the role of population branding in constructing notions of national genomic futures, which are central to national visions of the future contributions of populations to value creation. He highlights how the trope of Nordic exceptionalism and social trust is used to frame the uniqueness of Danish society as an i...

In his introduction, Tupasela outlines the theoretical contours of population branding. Taking science and technology studies (STS) as his starting point, he locates his work at the intersection of critical data studies (CDS) and nation branding. Using examples from two Nordic countries—Denmark and Finland—he identifies changes during the past ten...

In this chapter, Tupasela discusses the challenges associated with transparency and engagement in population branding, which relate to the challenges of defining and scoping public opinion and how public engagement strategies are utilized to construct an image of the public. Using the case of Finland to highlight the translation of public opinion i...

In his conclusion, the author returns to his argument that population branding is an extension of critical data studies and nation branding. At the same time, however, population branding is as much a practice of identity construction as it is a realignment of national resources to make them available for international research markets. Population...

The sharing, circulation, distribution, and use of human tissue samples and related data have become a major political and scientific pre-occupation during the past two decades. In the age of big data, the political, scientific, and economic momentum around the need to increasingly collect and collate massive amounts of data has intensified. At the...

Machine learning platforms have emerged as a new promissory technology that some argue will revolutionize work practices across a broad range of professions, including medical care. During the past few years, IBM has been testing its Watson for Oncology platform at several oncology departments around the world. Published reports, news stories, as w...

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 emerge...

The sharing, circulation, distribution, and use of human tissue samples and related data have become a major political and scientific pre-occupation during the past two decades. In the age of big data, the political, scientific, and economic momentum around the need to increasingly collect and collate massive amounts of data has intensified. At the...

Ethics policies and ethics work in cross-national genetic research and data sharing: flows, nonflows, and overflows In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in ord...

Since the sequencing of the human genome, as well as the completion of the first Human Genome Diversity Project, the benefits of studying one human population over another has been an ongoing debate relating to the replicability of findings in other populations. The leveraging of specific populations into research markets has made headlines in case...

Most university biobanks begin like other university research projects, that is, with an idea conceived by an individual researcher in pursuit of his/her own research interests, publications, funding, and career. Some biobanks, however, come to have scientific value that goes beyond the projects that were initially responsible for the collection of...

Most university biobanks begin like other university research projects, i.e. with an idea conceived by an individual researcher in pursuit of his/her own research interests, publications, funding and career. Some biobanks, however, come to have scientific value that goes beyond the projects that were initially responsible for the collection of the...

This chapter explores the challenges associated with the competition logics of large prospective cohort (LPC)biobanks within the European context by identifying the challenges associated with the sharing of samples and data. LPC biobanking involves large collections of human tissue samples from specific populations (usually national). The collectio...

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology (ICT) platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses...

Populations as brands in medical research – placing genes on the global genetic atlas Abstract: The collection, use and distribution of human tissue samples have stressed the new pathways in which human body parts and related information are becoming productive. This article probes the question of how the concept of branding can elucidate the way h...

Some authors have noted that in biobank research participants may be guided by what is called therapeutic misconception, whereby participants attribute therapeutic intent to research procedures. This article argues that the notion of therapeutic misconception is increasingly less justifi ed when evaluating biobanks. We present four examples taken f...

In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase scientific output. In tandem with this promotion of data sha...

Within the European context the Data Protection Directive (Directive 95/46/EC) maintains an important role in current legal debates on the rights and obligations different stakeholders have in the processing of personal data. Biobanking and data sharing infrastructures pose new ethical and legal dilemmas in the interpretations we uphold with regard...

The role that national epic poetry has played in romantic nationalism during the nineteenth and twentieth centuries is well documented. The role that the new genetics has played in such processes, however, is less well known and understood as a form of writing national narratives of origin. This article compares and contrasts the work of two doctor...

Post-graduate Biobank courses: A road from the auditorium to BOOC (Biobank Open Online Courses)

The idea of genetic authenticity and origin has been an important issue within genetics for decades for scientific, political, and economic reasons. The question of where species and populations come from, as well as the linking of genetic traits to particular geographical locations, has resurfaced as both a scientific and political site of interes...

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...

In 2012 a new biobanking law came into effect in Finland which, according to some, is one of the most comprehensive and broad national biobanking legislations in the world to date. The law covers both clinical and research collections and provides institutions with great flexibility in terms of transferring existing collections into a biobank. The...

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...

This report reviews several interesting research results how to govern healthcare information. Especially it raises a question how to manage information derived from biobank research and genetic databases into globally sustainable and socially robust healthcare products and services. One focus of this study was to compare governance and engagement...

Compared to other Europeans, Finns by and large have rather positive attitudes towards biobanks. However, there are many concerns and hopes about biobank activities. Knowledge on biobank operations are scarce, and more information is needed. The future challenges of biobanks include maintenance of transparency in the long-term and returning data to...

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...

Traditionally the analysis of biomedical discourses surrounding biobanking has focused on the role of donation and gift giving as central aspects related to the procurement and use of tissue samples. More recently, studies have looked at the political underpinnings of building national collections of tissue samples. These national projects draw inc...

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. A total of 1,195 responses (50%) were received after one re...

The purpose of the research was to study Finnish people's attitudes towards biomedical research and whether the research sponsor makes a difference to those attitudes. A survey questionnaire was sent to a random sample of 25–64 years old. Respondents had a positive attitude towards biomedical research and there were only small variations by populat...

Despite recent evidence that suggests that knowledge production within the medical community is increasingly based on knowledge-making coalitions or what some have called the co-production of knowledge, there remains a strong expert led policy agenda in many countries in relation to human genome research. This article reports on the role of experts...

This paper critically examines the legal and ethical dilemma in the institutionalization of a prevention and treatment technology on hereditary non-polyposis colorectal cancer (HNPCC) in Finland. Current medical practice and legislation support the notion of non-directiveness in genetic counselling, patient autonomy and personal privacy. Clinical d...

This paper examines diverging notions of value in the use of tissue sample collections and other information resources using a case study of hereditary colorectal cancer research in Finland. Recent science and technology policies that emphasize the production of commercial value derived from tissue sample collections are challenged by varying conce...

Lääketieteellisen tutkimuksen tuottama tie-teellinen tieto on noussut viime vuosina tärkeään asemaan tiede-ja teknologiapo-liittisessa keskustelussa. Etenkin ihmisku-doksen lääketieteellisen käytön merkitys on kasvanut sekä Suomessa että kansain-välisesti. Tässä yhteydessä biopankit ovat herättäneet runsaasti keskustelua ympäri maailmaa. Suomi ei o...

Erilaiset kudoskokoelmat luovat merkittävän tiedon-lähteen nykypäivän lääke-tieteelliselle tutkimukselle ja siitä saataville kaupallisille sovellutuksille. Näytteistä on muodostunut jopa merkittävä kansallinen kilpailuetu biolääketieteessä. Tarvittaisiin kuitenkin yhteiskunnallista keskustelua niistä toiminta-tavoista, joita Suomessa tulisi kehittä...

Endast avhandlingens sammandrag. Pappersexemplaret av hela avhandlingen finns för läsesalsbruk i Statsvetenskapliga biblioteket (Unionsgatan 35). Dessa avhandlingar fjärrutlånas endast som microfiche. Abstract only. The paper copy of the whole thesis is available for reading room use at the Library of Social Sciences (Unioninkatu 35) . Microfiche c...

During the past decade a great deal of effort and funding has been given to the development of national or regional biobanking initiatives. The goal of many such initiatives is to study disease and thus provide the basis for developing treatments and medicines. More recently, however, local biobanking initiatives and the data that can be derived fr...

The use of human tissue sample collections has become an important tool in biomedical research. The collection, use and distribution of human tissue samples, which include blood and diagnostic tissue samples, from which DNA can be extracted and analyzed has also become a major bio-political preoccupation, not only in national contexts, but also at...