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Can we know if donor trust expires? About trust relationships and time in the context of open consent for future data use
  1. Felix Gille,
  2. Caroline Brall
  1. Department of Health Sciences and Technology, ETH Zurich, Zurich, Switzerland
  1. Correspondence to Dr Felix Gille, Department of Health Sciences and Technology, ETH Zurich, Zurich 8092, Switzerland; felix.gille{at}hest.ethz.ch

Abstract

As donor trust legitimises research, trust is vital for research in the fields of biomedicine, genetics, translational medicine and personalised medicine. For parts of the donor community, the consent signature is a sign of trust in research. Many consent processes in biomedical research ask donors to provide their data for an unspecified future use, which introduces uncertainty of the unknown. This uncertainty can jeopardise donor trust or demand blind trust. But which donor wants to trust blindly? To reduce this uncertainty, we explore first, which future-proof actors donors could trust when signing a consent form. Second, we discuss the question Can we know if donor trust expires? and what prevents donor trust from expiring. Finally, we present possible measures that can help to nurture trust in the far future. In this article, we draw on our previous research on trust in biomedical research, on trust in the broader healthcare system and Niklas Luhmann’s and Anthony Giddens’ trust theories. Our findings suggest that, in the far future, researchers will need to consider donor autonomy, as well as societal norms and values of the time period in which the data were donated. They will need to find mechanisms where possible to publicly announce the use of old data sets. However, foremost researchers will need to treat the data respectfully. It remains vital that professionals and the society continue to elaborate on the norms and values that shape the common understanding of what is morally right and wrong when researching data.

  • informed consent
  • research ethics
  • autonomy

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Footnotes

  • Twitter @felix_gille & @phe_trust, @CarolineBrall

  • Contributors This article is based on earlier work conducted independently as part of FG and CB doctoral theses. Both authors contributed equally to the conceptual work and writing of this article. Both authors have read and approved the manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement There are no data in this work.

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