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Title

Citizens' views on sharing their health data: the role of competence, reliability and pursuing the common good
Authors
Rivas Velarde, Minerva
Tsantoulis, Petros
Burton-Jeangros, Claudine
Aceti, Monica Sandra
Chappuis, Pierre
Hurst, Samia
Published in BMC medical ethics. 2021, vol. 22, no. 1, 62
Abstract 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.
Keywords Trust — Informed consent — Big data
Identifiers
PMID: 34006284
Full text
Article (Published version) (1.1 MB) - public document Free access
Other version: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8130128/
Structures
Faculté de médecine / Section de médecine clinique / Département de médecine
Faculté de médecine / Section de médecine clinique / Département de santé et médecine communautaires / Institut Ethique Histoire Humanités
Faculté des sciences de la société / Département de sociologie
Faculté des sciences de la société / Institut de recherches sociologiques
Research group Ethique biomédicale (783)
Citation
(ISO format) 		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 https://archive-ouverte.unige.ch/unige:152295

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Deposited on : 2021-06-11

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