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Patient data and big data. An “ownership” overview through the fundamental principles in biomedical ethics

Martin Mirchev, Albena Kerekovska

Abstract

INTRODUCTION:

Given the big data information reality today, global health systems are able to operate with seemingly endless amounts of information. But there are a lot of avenues for its use - for clinical care, patient history, medical and pharmaceutical research, commercial profit. Many stakeholders with different aspirations are interested, and they are all using patients’ data. This fact brings the tricky question about ownership of the information in the current “big” context. In terms of the ethical considerations related to autonomy, non-maleficence, beneficence, and justice, this question gets even trickier. 

AIM:

The aim of this article is to briefly outline the concept of patient information ownership in the big data information context through the prism of the bioethical principles of autonomy, non-maleficence, beneficence, and justice. 

MATERIALS AND METHODS:

Ethical analysis and documental research, including normative acts, philosophical literature and studies have been used. 

RESULTS AND CONCLUSION

Patients’ data is a valuable resource in many ways, which requires certain distinctions on moral grounds: the interest in profit, if the information is used as a commercial artefact, and the “ideal” use for the needs of medical and scientific research. In the current information and economics context, it is indeed very hard to determine exactly where to draw the line between commercial and ideal use, but we need to ensure that properly managed medical data could be used for important medical enterprises. In light of the biomedical principles, there is a way to balance the individual interests related to privacy and autonomy with the general public interest in medical science development and improvement.

 


Keywords

ethics; principles; patient data; big data

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DOI: http://dx.doi.org/10.14748/sssp.v5i1.6564

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About The Authors

Martin Mirchev
Medical University of Varna
Bulgaria

Department of Social Medicine and Healthcare Organisation, Faculty of Public Health

Albena Kerekovska
Medical University of Varna
Bulgaria

Department of Social Medicine and Healthcare Organisation, Faculty of Public Health

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