
Genome Finland
From Rare Diseases to Data Economy

Authors
Ilpo Helén
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.
Karoliina Snell
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.
Heta Tarkkala
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.
Aaro Tupasela
Aaro Tupasela is a Docent of Sociology with an interest in medical science and technology studies (STS). For the past 20 years he has explored different perspectives related to the biomedical collection and use of human tissue collections, as well as health related data. He has previously worked as an Associate professor at the Department of Public Health at the University of Copenhagen. His most recent book Populations as Brands - Marketing National Resources for Global Data Markets (Palgrave 2021) explores how data on populations in Finland and Denmark is being marketed for the global data economy.