Access to Personal Information for Public Health Research: Transparency Should Always Be Mandatory

Authors

  • Louise Ringuette Programmes de bioéthique, École de santé publique, Université de Montréal; Institut de recherche en santé publique de l’Université de Montréal, Montréal, Canada
  • Jean-Christophe Bélisle-Pipon Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School, Cambridge, USA; Health Law Institute, Dalhousie University, Halifax, Canada
  • Victoria Doudenkova Programmes de bioéthique, École de santé publique, Université de Montréal; Institut de recherche en santé publique de l’Université de Montréal, Montréal, Canada
  • Bryn Williams-Jones Programmes de bioéthique, École de santé publique, Université de Montréal; Institut de recherche en santé publique de l’Université de Montréal, Montréal, Canada

DOI:

https://doi.org/10.7202/1058271ar

Keywords:

data access, personal data, privacy, transparency, law, public interest

Language(s):

English

Abstract

In Québec, the Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information provides an exception to transparency to most public institutions where public health research is conducted by allowing them to not disclose their uses of personal data (often collected without the consent of those being studied). This exceptionalism is ethically problematic due to important concerns (e.g., protection of privacy and potential harms of secondary uses of data) and we argue that all those who conduct research should be transparent and accountable for the work they do in the public interest.

(c) Emanuelle Dufour

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Published

2018-12-07

How to Cite

[1]
Ringuette L, Bélisle-Pipon J-C, Doudenkova V, Williams-Jones B. Access to Personal Information for Public Health Research: Transparency Should Always Be Mandatory. Can. J. Bioeth 2018;1:94-8. https://doi.org/10.7202/1058271ar.

Issue

Vol. 1 No. 2 (2018): Open Issue

Section

Critical commentaries

License

Copyright (c) 2018 Louise Ringuette, Jean-Christophe Bélisle-Pipon, Victoria Doudenkova, Bryn Williams-Jones

Creative Commons License

This work is licensed under a Creative Commons Attribution 4.0 International License.

The Canadian Journal of Bioethics applies the Creative Commons Attribution 4.0 International License to all its publications. Authors therefore retain copyright of their publication, e.g., they can reuse their publication, link to it on their home page or institutional website, deposit a PDF in a public repository. However, the authors allow anyone to download, reuse, reprint, modify, distribute, and/or copy their publication, so long as the original authors and source are cited.

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