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

  • 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
Keywords: data access, personal data, privacy, transparency, law, public interest

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.

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. [Internet]. 2018Dec.7 [cited 2020Jul.3];1(2):94-8. Available from: https://cjb-rcb.ca/index.php/cjb-rcb/article/view/102
Section
Critical commentaries