4.0 Article

Health as the Moral Principle of Post-Genomic Society: Data-Driven Arguments Against Privacy and Autonomy

Journal

CAMBRIDGE QUARTERLY OF HEALTHCARE ETHICS
Volume 28, Issue 2, Pages 201-214

Publisher

CAMBRIDGE UNIV PRESS
DOI: 10.1017/S0963180119000057

Keywords

data-driven medicine; health; privacy; biobanks; genomic knowledge; autonomy; choice; strategy; innovation policy; consent

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In Finland, as well as all over the globe, great weight is put on the possibilities of large data collections and 'big data' for generating economic growth, enhancing medical research, and boosting health and wellbeing in totally new ways. This massive data gathering and usage is justified by the moral principle of improving health. The imperative of health thus legitimizes data collection, new infrastructures and innovation policy. It is also supported by the rhetoric of health promotion. New arrangements in health research and innovations in the health sector are justified, as they produce health, while the moral principle of health also obligates individual persons to pursue healthy lifestyles and become healthy citizens. I examine how, in this context of Finnish data-driven medicine, arguments related to privacy and autonomy become silenced when contrasted with the moral principle of health.

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