Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data

Abstract

Broad consent is increasingly recommended as an acceptable consent model for biobanking human samples and health data with a view to their future use in research. Empirical evidence on the practice of broad consent and its implementation in the hospital setting, however, is still very limited. We analyse and discuss results from a qualitative study of perceptions of a sample of patients and biobank recruiters regarding broad consent to participate in a hospital-based biobank for prospective research on genomic and health data. Our findings suggest that contextual and relational factors play an important role in the practice of broad consent, and illustrate that broad consent relies as much on intuition as on reasoning. Moreover, we show that seeking broad consent in the hospital affects patient-recruiter interaction and that “conditional” trust plays a significant role in broad-consent decision-making. In conclusion, we provide recommendations to improve patient autonomy in the context of hospital-based broad consent.

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Notes

  1. 1.

    For more information, see the website of the Swiss Academy of Medical Sciences (https://www.samw.ch/fr/Ethique/Ethique-de-la-recherche/Modele-CG.html, last retrieved on April 7th, 2019) and of Unimedsuisse, the Swiss Association of University Medicine (https://www.unimedsuisse.ch/fr/projets/consentment-general, last retrieved on April 7th, 2019).

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Acknowledgements

This study was funded by a grant of the Research Commission of the Département universitaire de médecine et santé communautaires (DUMSC, CHUV) and carried out by the Institute of Humanities in Medicine (UNIL-CHUV), in collaboration with the Institute of Social and Preventive Medicine (UNIL-CHUVl) and The ColLaboratory (UNIL). The authors warmly thank the management team and all the collaborators of the Lausanne Institutional Biobank who made our study possible and provided essential insights into the issues discussed in this article. They also thank Murielle Bochud and Lazare Benaroyo, co-applicants of the study, for their support and collaboration in the design of the research, and Alain Kaufmann for his contribution in designing the study, preparing the fieldwork and analysing results.

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Correspondence to Gaia Barazzetti.

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Barazzetti, G., Bosisio, F., Koutaissoff, D. et al. Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data. Eur J Hum Genet (2020). https://doi.org/10.1038/s41431-020-0585-0

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