The devil is in the details: an analysis of patient rights in Swiss cancer registries.

Details

Serval ID
serval:BIB_BEEB87FDE68D
Type
Article: article from journal or magazin.
Publication sub-type
Review (review): journal as complete as possible of one specific subject, written based on exhaustive analyses from published work.
Collection
Publications
Institution
Title
The devil is in the details: an analysis of patient rights in Swiss cancer registries.
Journal
Journal of medical ethics
Author(s)
Martani A., Erard F., Casonato C., Elger B.S.
ISSN
1473-4257 (Electronic)
ISSN-L
0306-6800
Publication state
Published
Issued date
12/2022
Peer-reviewed
Oui
Volume
48
Number
12
Pages
1048-1053
Language
english
Notes
Publication types: Journal Article ; Research Support, Non-U.S. Gov't
Publication Status: ppublish
Abstract
Cancer registries are an important part of the public health infrastructure, since they allow to monitor the temporal trends of this illness as well as facilitate epidemiological research. In order to effectively set up such registries, it is necessary to create a system of data collection that permits to record health-related information from patients who are diagnosed with cancer. Given the sensitive nature of such data, it is debated whether their recording should be based on consent or whether alternative arrangements are possible (eg, opt-out systems where information is automatically collected but patients can later withdraw). In the recent reform of the Swiss cancer registration legislation, the lawmaker set out to implement rules about the recording of data in cancer registries that would allegedly go beyond a consent-based model, in order to balance accurate registration with respect of patient rights. However, by analysing the operational norms of the new legislation and comparing them with those of other systems, it emerges that the Swiss rules de facto closely resemble a system of registration based on informed consent-in partial contradiction with the objective pursued by the lawmaker. In this paper, we show how the details of a policy are crucial to determine its true nature and we highlight some critical elements-from an ethical standpoint-of the recently reformed Swiss policy on cancer registration.
Keywords
Humans, Switzerland/epidemiology, Patient Rights, Informed Consent, Registries, Neoplasms, Confidentiality, confidentiality/privacy, informed consent, law, population policy, public health ethics
Pubmed
Web of science
Create date
12/10/2021 8:52
Last modification date
22/09/2023 5:56
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