Moral autonomy of patients and legal barriers to a possible duty of health related data sharing

Ethics and Information Technology 25 (1):1-11 (2023)
  Copy   BIBTEX

Abstract

Informed consent bears significant relevance as a legal basis for the processing of personal data and health data in the current privacy, data protection and confidentiality legislations. The consent requirements find their basis in an ideal of personal autonomy. Yet, with the recent advent of the global pandemic and the increased use of eHealth applications in its wake, a more differentiated perspective with regards to this normative approach might soon gain momentum. This paper discusses the compatibility of a moral duty to share data for the sake of the improvement of healthcare, research, and public health with autonomy in the field of data protection, privacy and medical confidentiality. It explores several ethical-theoretical justifications for a duty of data sharing, and then reflects on how existing privacy, data protection, and confidentiality legislations could obstruct such a duty. Consent, as currently defined in the General Data Protection Regulation – a key legislative framework providing rules on the processing of personal data and data concerning health – and in the recommendation of the Council of Europe on the protection of health-related data – explored here as soft-law – turns out not to be indispensable from various ethical perspectives, while the requirement of consent in the General Data Protection Regulation and the recommendation nonetheless curtails the full potential of a duty to share medical data. Also other legal grounds as possible alternatives for consent seem to constitute an impediment.

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 94,593

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

The problem of the consent for the processing of health data, particularly for biomedical research purposes, from the perspective of fundamental rights protection in the Digital Era.Joaquín Sarrión Esteve - 2018 - Revista de Derecho y Genoma Humano: Genética, Biotecnología y Medicina Avanzada = Law and the Human Genome Review: Genetics, Biotechnology and Advanced Medicine 48:107-132.

Analytics

Added to PP
2023-03-17

Downloads
13 (#1,064,596)

6 months
10 (#397,728)

Historical graph of downloads
How can I increase my downloads?

Citations of this work

No citations found.

Add more citations

References found in this work

After virtue: a study in moral theory.Alasdair C. MacIntyre - 1981 - Notre Dame, Ind.: University of Notre Dame Press.
Saints and heroes.J. O. Urmson - 1958 - In Abraham Irving Melden (ed.), Essays in moral philosophy. Seattle: University of Washington Press.
Scientific research is a moral duty.J. Harris - 2005 - Journal of Medical Ethics 31 (4):242-248.

View all 19 references / Add more references