TY - JOUR

T1 - The life and death of confidentiality

T2 - a historical analysis of the flows of patient information

AU - Wadmann, Sarah

AU - Hartlev, Mette

AU - Hoeyer, Klaus

PY - 2023

Y1 - 2023

N2 - Health data can contain sensitive information. People who consult a doctor seek help on issues that matter to them: they typically expect some form of confidentiality. However, the notion and practices of confidentiality have changed dramatically over time. In this article, we trace the history of confidentiality in the Danish healthcare system, which has one of the world’s most integrated patient information infrastructures. Building on an analysis of legal and political documents dating back to the late seventeenth century, we show that confidentiality originated as a social phenomenon that helped build trust in healthcare professionals and gradually developed into an idiom of citizens rights. Lately, confidentiality has given way to more technocratic forms of data protection. As the political, legal and technological reality, which the idea of confidentiality once referred to, has radically changed, we argue that confidentiality has become what Ulrik Beck has called a ‘zombie category’—a notion that lives on even if its content has passed away. If confidentiality has become a zombie concept, we suggest it is time to discuss what may take its place so that patient interests are protected in the current political economy of health data

AB - Health data can contain sensitive information. People who consult a doctor seek help on issues that matter to them: they typically expect some form of confidentiality. However, the notion and practices of confidentiality have changed dramatically over time. In this article, we trace the history of confidentiality in the Danish healthcare system, which has one of the world’s most integrated patient information infrastructures. Building on an analysis of legal and political documents dating back to the late seventeenth century, we show that confidentiality originated as a social phenomenon that helped build trust in healthcare professionals and gradually developed into an idiom of citizens rights. Lately, confidentiality has given way to more technocratic forms of data protection. As the political, legal and technological reality, which the idea of confidentiality once referred to, has radically changed, we argue that confidentiality has become what Ulrik Beck has called a ‘zombie category’—a notion that lives on even if its content has passed away. If confidentiality has become a zombie concept, we suggest it is time to discuss what may take its place so that patient interests are protected in the current political economy of health data

KW - Confidentiality

KW - Datafication

KW - Digitalization

KW - Information technology

KW - Secrecy

KW - Zombie categories

U2 - 10.1057/s41292-021-00269-x

DO - 10.1057/s41292-021-00269-x

M3 - Journal article

C2 - 35126615

VL - 18

SP - 282

EP - 307

JO - BioSocieties

JF - BioSocieties

SN - 1745-8552

ER -