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Citizens' views on sharing their health data: the role of competence, reliability and pursuing the common good

Publié dansBMC Medical Ethics, vol. 22, no. 1, 62
Date de publication2021
Résumé

Background In this article, we address questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted by the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public regarding predictive oncology, genetic sequencing, and cancer. Methods This paper presents the results of a citizen forum that included 73 participants. A research tool titled "the mechanics of consent" was designed for this study. This tool is a table encouraging participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants' discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis. Results The results are a compilation of responses from the mechanics of consent tool divided into two sections; the first presents quantitative results of collective responses regarding attitudes to consent to donate their data. The second section present qualitative findings emerged from the discussion amongst participants. Discussion Choice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, by acting in a competent, reliable, and honest manner. Governance systems ought to be better equipped to address ethical issues raise by the growing presence of non-traditional research actors, consent of exchanges of data via digital devices and online activity such as social media and fairness of data trading. Finally, informed consent is one of the various elements that contribute to conducting ethical research. More needs to be done to strengthen governance and ensure adequate protection of research participants, particularly to address issues related to predictive health analytics.

Mots-clés
  • Trust
  • Informed consent
  • Big data
Groupe de recherche
Citation (format ISO)
RIVAS VELARDE, Minerva et al. Citizens” views on sharing their health data: the role of competence, reliability and pursuing the common good. In: BMC Medical Ethics, 2021, vol. 22, n° 1, p. 62. doi: 10.1186/s12910-021-00633-3
Fichiers principaux (1)
Article (Published version)
Identifiants
ISSN du journal1472-6939
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Informations techniques

Création18.05.2021 13:51:00
Première validation18.05.2021 13:51:00
Heure de mise à jour16.03.2023 00:43:39
Changement de statut16.03.2023 00:43:39
Dernière indexation06.05.2024 07:42:19
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