Policy, practice and patient experience in the age of intensified data sourcing

Publications

Peer reviewed articles (9)

Traveling questions: uncertainty and nonknowledge as vehicles of translation in genetic research participation

Author(s): Klaus Hoeyer
Published in: New Genetics and Society, Issue 35/4, 2016, Page(s) 351-371, ISSN 1463-6778
DOI: 10.1080/14636778.2016.1245134

Ethical sharing of health data in online platforms – which values should be considered?

Author(s): Brígida Riso, Aaro Tupasela, Danya F. Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C. H. Kongsholm, Silvia Zullo, Vojin Rakic
Published in: Life Sciences, Society and Policy, Issue 13/1, 2017, ISSN 2195-7819
DOI: 10.1186/s40504-017-0060-z

“That is why I have trust”: unpacking what ‘trust’ means to participants in international genetic research in Pakistan and Denmark

Author(s): Zainab Sheikh, Klaus Hoeyer
Published in: Medicine, Health Care and Philosophy, 2017, ISSN 1386-7423
DOI: 10.1007/s11019-017-9795-9

Dangers of the digital fit: Rethinking seamlessness and social sustainability in data-intensive healthcare

Author(s): Sarah Wadmann, Klaus Hoeyer
Published in: Big Data & Society, Issue 5/1, 2018, Page(s) 205395171775296, ISSN 2053-9517
DOI: 10.1177/2053951717752964

“Stop Talking to People; Talk with Them”: A Qualitative Study of Information Needs and Experiences Among Genetic Research Participants in Pakistan and Denmark

Author(s): Zainab Afshan Sheikh, Klaus Hoeyer
Published in: Journal of Empirical Research on Human Research Ethics, Issue 14/1, 2018, Page(s) 3-14, ISSN 1556-2646
DOI: 10.1177/1556264618780810

‘We don’t like the rules and still we keep seeking new ones’: The vicious circle of quality control in professional organizations

Author(s): Sarah Wadmann, Christina Holm-Petersen, Charlotta Levay
Published in: Journal of Professions and Organization, 2018, ISSN 2051-8803
DOI: 10.1093/jpo/joy017

Newborn dried blood spot samples in Denmark: the hidden figures of secondary use and research participation

Author(s): Francisca Nordfalk, Claus Thorn Ekstrøm
Published in: European Journal of Human Genetics, Issue 27/2, 2019, Page(s) 203-210, ISSN 1018-4813
DOI: 10.1038/s41431-018-0276-2

The rise and fall of an opt-out system

Author(s): Francisca Nordfalk, Klaus Hoeyer
Published in: Scandinavian Journal of Public Health, Issue 1-5, 2017, Page(s) 140349481774518, ISSN 1403-4948
DOI: 10.1177/1403494817745189

Sundhedsdata og kvalitetsudvikling – et retligt kludetæppe

Author(s): Mette Hartlev & Sarah Wadmann
Published in: Juristen, Issue 4, 2018, Page(s) 116-128, ISSN 0107-699X

Book chapters (3)

Denmark at a Crossroad? Intensified Data Sourcing in a Research Radical Country

Author(s): Hoeyer, K L Floridi & B Mittelstadt (eds.)
Published in: The Ethics of Biomedical Big Data, 2016, Page(s) Pp. 73-94

Data-Sharing Politics and the Logics of Competition in Biobanking

Author(s): Aaro Tupasela
Published in: Bioeconomies, 2017, Page(s) 187-206
DOI: 10.1007/978-3-319-55651-2_8

Lost and Found: Relocating the Individual in the Age of Intensified Data Sourcing in European Healthcare in Personalized medicine, individual choice and the common good

Author(s): Hoeyer, K Editors: B Beers, S Sterckx and D Dickenson
Published in: Personalized medicine, individual choice and the common good, 2018, Page(s) 144-166

Monographic books (1)

Hvem skal bruge sundhedsdata – og til hvad?

Author(s): Klaus Hoeyer
Published in: 2019