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

被引:0
|
作者
Cagnazzo, Celeste [1 ]
Ficara, Bruno [1 ]
Palermo, Federica [2 ]
Fagioli, Franca [1 ]
机构
[1] AOU Citta Salute & Sci Torino, Osped Infantile Regina Margher, SC Oncoematol Pediat, Piazza Polonia 94, I-10126 Turin, Italy
[2] IRCCS Ist Nazl Tumori Milano, SC SS Clin Trial Ctr Fdn, Milan, Italy
来源
TUMORI JOURNAL | 2024年 / 110卷 / 01期
关键词
Public interest; informed consent; Data Protection Regulation; data privacy; observational research; DATA PROTECTION;
D O I
10.1177/03008916231190956
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
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.
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页码:6 / 9
页数:4
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