Mind the gap with Europe. Why public interest cannot be a good reason to perform observational and epidemiological research?

The consequences of the Italian privacy legislation, that represents a very restrictive implementation of the general European regulation on data protection, have mainly been felt at the level of observational research. In this field is not always possible to obtain the consent of subjects, and as for retrospective studies, it is not currently clear which is the correct regulatory procedure to follow. This uncertainty in the law's implementation has given way to multiple interpretations, making it difficult to obtain a homogeneous path in Italy. However, it is possible that the observation point has been totally wrong so far and that it would be more correct to choose a different legal bases than consent, both to preserve scientific progress and collective ethics, without losing the protection of the subject. This approach, which has already been followed by other European countries, could bring us closer to the rest of Europe and allow us to competitively participate in community projects that we are often cut off from.

Medienart:

E-Artikel

Erscheinungsjahr:

2024

Erschienen:

2024

Enthalten in:

Zur Gesamtaufnahme - volume:110

Enthalten in:

Tumori - 110(2024), 1 vom: 25. Feb., Seite 6-9

Sprache:

Englisch

Beteiligte Personen:

Cagnazzo, Celeste [VerfasserIn]
Ficara, Bruno [VerfasserIn]
Palermo, Federica [VerfasserIn]
Fagioli, Franca [VerfasserIn]

Links:

Volltext

Themen:

Data Protection Regulation
Data privacy
Editorial
Informed consent
Observational research
Public interest

Anmerkungen:

Date Completed 08.02.2024

Date Revised 08.02.2024

published: Print-Electronic

Citation Status MEDLINE

doi:

10.1177/03008916231190956

funding:

Förderinstitution / Projekttitel:

PPN (Katalog-ID):

NLM360477275