G5 Article dissertation

Datenherrschaft – an Ethically Justified Solution to the Problem of Ownership of Patient Information




AuthorsKoskinen Jani

PublisherTurun yliopisto. Turun kauppakorkeakoulu

Publishing placeTurku

Publication year2016

ISBN978-952-249-466-5

eISBN978-952-249-467-2

Web address http://urn.fi/URN:ISBN:978-952-249-467-2


Abstract

Patient information systems are crucial components for the modern healthcare 

and medicine. It is obvious that without them the healthcare cannot function 

properly – one can try to imagine how brain surgery could be done without using 

information systems to gather and show information needed for an operation. 

Thus, it can be stated that digital information is irremovable part of modern 

healthcare. However, the legal ownership of patient information lacks a coherent 

and justified basis. The whole issue itself is actually bypassed by controlling pa- 

tient information with different laws and regulations how patient information can 

be used and by whom. Nonetheless, the issue itself – who owns the patient in- 

formation – is commonly missed or bypassed. 

This dissertation show the problems if the legislation of patient information 

ownership is not clear. Without clear legislation, the outcome can be unexpected 

like it seems to be in Finland, Sweden and United Kingdom: the lack of clear 

regulation has come up with unwanted consequences because of problematic Eu- 

ropean Union database directive implementation in those countries. The legal 

ownership is actually granted to the creators of databases which contains the pa- 

tient information, and this is not a desirable situation. 

In healthcare and medicine, we are dealing with issues such as life, health and 

information which are very sensitive and in many cases very personal. Thus, this 

dissertation leans on four philosophical theories form Locke, Kant, Heidegger 

and Rawls to have an ethically justified basis for regulating the patient infor- 

mation in a proper way. Because of the problems of property and ownership in 

the context of information, a new concept is needed and presented to replace the 

concept of owning, that concept being Datenherrschaft (eng. mastery over in- 

formation). Datenherrschaft seems to be suitable for regulating patient infor- 

mation because its core is the protection of one’s right over information and this 

aligns with the work of the philosophers whose theories are used in the work. 

The philosophical argumentation of this study shows that Datenherrschaft 

granted to the patients is ethically acceptable. It supports the view that patient 

should be controlling the patient information about themselves unless there are 

such specific circumstance that justifies the authorities to use patient information 

to protect other people’s basic rights. Thus, if the patients would be legally grant- 

ed Datenherrschaft over patient information we would endorse patients as indi- 

viduals who have their own and personal experience of their own life and have a 

strong stance against any unjustified paternalism in healthcare. 




Last updated on 2024-03-12 at 13:15