The Protection of Data Concerning Health in Europe

Mulder, Trix

doi:10.21552/edpl/2019/2/10

Cited by 2 publications

(1 citation statement)

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“…On Moreover, it may not always be evident what type of data constitutes health data, as the diversity of collected data and the possibility to link data seems to blur the line between health and non-health data (Vayena et al, 2018, pp. 67-68;Vayena & Madoff, 2019;Mulder, 2019;The Article 29 Working Party, 2015). The Article 29 Working Party (now known as the European Data Protection Board) described data generated in a professional and medical context concretely as 'medical data' that forms part of the broader defined concept of 'health data'.…”

Section: The Current Legal Contextmentioning

confidence: 99%

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

Vedder

Spajić²

2023

Ethics Inf Technol

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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.

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Section: The Current Legal Contextmentioning

confidence: 99%