Article Text

Download PDFPDF
The devil is in the details: an analysis of patient rights in Swiss cancer registries
  1. Andrea Martani1,
  2. Frédéric Erard2,
  3. Carlo Casonato3,
  4. Bernice Simone Elger1,4
  1. 1Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
  2. 2Legal and Technology Transfer Office, SIB Swiss Institute of Bioinformatics, Lausanne, Switzerland
  3. 3Faculty of Law, University of Trento, Trento, Trentino-Alto Adige, Italy
  4. 4University Center of Legal Medicine, University of Geneva, Geneva, Switzerland
  1. Correspondence to Andrea Martani, University of Basel Institute for Biomedical Ethics, Basel 4056, Switzerland; andrea.martani{at}unibas.ch

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.

  • confidentiality/privacy
  • informed consent
  • law
  • population policy
  • public health ethics

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study. No datasets were generated or used to write this article.

Statistics from Altmetric.com

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study. No datasets were generated or used to write this article.

View Full Text

Footnotes

  • Contributors AM wrote the first draft. BSE, FE and CC reviewed and edited the manuscript according to their particular area of expertise (BSE in ethics with respect to biobanking and database management, FE in Swiss data protection issues and CC in bioethics and comparative legal analysis). After several rounds of review and discussions, the definitive draft was finalised and approved by all authors.

  • Funding AM and BSE acknowledge the financial support provided by the Swiss National Science Foundation (SNF NRP-74 Smarter Healthcare, grant number 407440_167356).

  • Disclaimer The funder had no role in the drafting of this manuscript and the views expressed therein are those of the authors and not necessarily those of the funder.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Other content recommended for you