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

Martani, Andrea and Erard, Frédéric and Casonato, Carlo and Elger, Bernice Simone. (2021) The devil is in the details: an analysis of patient rights in Swiss cancer registries. Journal of Medical Ethics, Published Online First: 05 October 2021.

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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.
Faculties and Departments:03 Faculty of Medicine > Departement Public Health > Ehemalige Einheiten Public Health > Medizin- und Gesundheitsethik (Reiter-Theil)
08 Cross-disciplinary Subjects > Ethik > Institut für Bio- und Medizinethik > Bio- und Medizinethik (Elger)
03 Faculty of Medicine > Departement Public Health > Ethik in der Medizin > Bio- und Medizinethik (Elger)
UniBasel Contributors:Elger, Bernice Simone and Martani, Andrea
Item Type:Article, refereed
Article Subtype:Research Article
Publisher:BMJ Publishing Group
ISSN:1473-4257
e-ISSN:1473-4257
Note:Publication type according to Uni Basel Research Database: Journal article
Language:English
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edoc DOI:
Last Modified:08 Apr 2022 11:41
Deposited On:08 Apr 2022 11:41

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