Data as promise: Reconfiguring Danish public health through personalized medicine

K Hoeyer - Social studies of science, 2019 - journals.sagepub.com
'Personalized medicine'might sound like the very antithesis of population science and public
health, with the individual taking the place of the population. However, in practice …

Personalised medicine and the state: A political discourse analysis

V Burau, N Nissen, MD Terkildsen, U Væggemose - Health Policy, 2021 - Elsevier
The last decade has seen a range of health policy initiatives relating to personalised
medicine. There is an emerging body of studies that demonstrates the continued importance …

A solidarity paradox–welfare state data in global health data economy

K Snell, H Tarkkala, A Tupasela - Health, 2023 - journals.sagepub.com
Nordic welfare states have well institutionalised practises of gathering health and social
wellbeing data from their citizens. The establishment of population registers coincided with …

Impossible, unknowable, accountable: Dramas and dilemmas of data law

A Cool - Social Studies of Science, 2019 - journals.sagepub.com
On May 25, 2018, the European Union's General Data Protection Regulation (GDPR) came
into force. EU citizens are granted more control over personal data while companies and …

Valuation in emerging technoscience business: a case study of Finnish biobank research

I Helén, H Lehtimäki - European Journal of Innovation Management, 2023 - emerald.com
Purpose The paper contributes to the discussion on valuation in organization studies and
strategic management literature. The nascent literature on valuation practices has examined …

Deliberations about genomic research and biobanks with citizens of the Chickasaw Nation

J Reedy, JW Blanchard, J Lund, PG Spicer… - Frontiers in …, 2020 - frontiersin.org
Amid the rapid growth of precision medicine and biobanking initiatives, there have been few
efforts at cataloging the implications of these initiatives for Indigenous communities. A …

Questioning the rhetoric of a 'willing population'in Finnish biobanking

K Snell, H Tarkkala - Life Sciences, Society and Policy, 2019 - Springer
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 …

Representing vulnerable populations in genetic studies: The case of the Roma

V Lipphardt, GA Rappold, M Surdu - Science in Context, 2021 - cambridge.org
Moreau (2019) has raised concerns about the use of DNA data obtained from vulnerable
populations, such as the Uighurs in China. We discuss another case, situated in Europe and …

Narrating ethnicity and diversity in Middle Eastern national genome projects

EK Burton - Social studies of science, 2018 - journals.sagepub.com
Most Middle Eastern populations outside Israel have not been represented in Western-
based international human genome sequencing efforts. In response, national-level projects …

'The window of opportunity is closing'—advocating urgency and unity

H Tarkkala, K Snell - Humanities and Social Sciences Communications, 2022 - nature.com
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 …