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    Genome Finland

    From Rare Diseases to Data Economy

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    Author(s)
    Helén, Ilpo
    Snell, Karoliina
    Tarkkala, Heta
    Tupasela, Aaro
    Language
    English
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    Abstract
    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 as biobanks. The book opens up the reasoning and discussions as well as the settings and events through which Finnish medical genetics reached the top level of international biomedicine in the late 1990s, biobanks and biobank research evolved during the 2000s and 2010s, and large transnational public-private partnership projects utilising massive amounts of genome and patient data started to dominate also Finnish research into the 2020s. In particular, Genome Finland examines and exposes the connections between biomedical science, ‘knowledge-based’ economy and business, and innovation policy in Finland during the past decades.
    URI
    https://library.oapen.org/handle/20.500.12657/91187
    Keywords
    Nordic welfare state; Data economy; Biobanking; Informed consent; Biomedical research and innovation; Genomics
    DOI
    10.33134/HUP-24
    ISBN
    9789523691063, 9789523691087, 9789523691070
    Publisher
    Helsinki University Press
    Publisher website
    https://hup.fi/
    Publication date and place
    Helsinki, 2024
    Classification
    History of medicine
    Children’s / Teenage general interest: Science and technology
    Sociology
    Medical sociology
    Pages
    310
    Rights
    https://creativecommons.org/licenses/by-nc/4.0/
    • Imported or submitted locally

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    License

    • If not noted otherwise all contents are available under Attribution 4.0 International (CC BY 4.0)

    Credits

    • logo EU
    • This project received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 683680, 810640, 871069 and 964352.

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