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Genome Finland: From Rare Diseases to Data Economy by Helén, Ilpo

Genome Finland: From Rare Diseases to Data Economy

by Ilpo Helén , Karoliina Snell , Heta Tarkkala
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Book cover type: Paperback
  • ISBN13: 9789523691063
  • Binding: Paperback
  • Subject: N/A
  • Publisher: Helsinki University Press
  • Publisher Imprint: Helsinki University Press
  • Publication Date:
  • Pages: 310
  • Original Price: GBP 33.0
  • Language: English
  • Edition: N/A
  • Item Weight: 418 grams
  • BISAC Subject(s): Technology Studies

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.

Helén, Ilpo: - Ilpo Helén is Professor of Sociology at the Department of Social Sciences, University of Eastern Finland and Adjunct Professor (Docent) of Sociology at the University of Helsinki. He is an internationally distinguished scholar in sociology of biomedicine and medical STS, and he has written widely on biopolitics and political economy of medical genomics and other biomedical technologies, biobanking, and datafication of medicine and healthcare. His current studies are focused on datafication of healthcare and health data economies. ORCiD: 0000-0002-0071-0972

Snell, Karoliina: - Karoliina Snell works as a programme director at the University of Helsinki. She is a Docent of Sociology and specialises in science and technology studies. She has studied biobanks, genomics and health data from the perspective of policy and governance as well as public understanding and engagement in science. Her current research focuses on data literacy and digital public services and infrastructures. She is also expert in research ethics. ORCiD: 0000-0002-2643-6676

Tarkkala, Heta: - Heta Tarkkala is a Docent of Sociology. She is currently an Academy Research Fellow at the University of Helsinki, starting a project on wastewater as health data. Previously she has been working on digitalisation policies and public services. She has also studied biobanks, objects of science and reorganization of health data. She works in the fields of science & technology studies (STS) and sociology. ORCiD: 0000-0001-5284-3091

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