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Fear of Dementia and the Obligation to Provide Aggregate Research Results to Study Participants

Published online by Cambridge University Press:  18 November 2022

Mackenzie Graham ,
Francesca Farina ,
Craig W. Ritchie ,
Brian Lawlor  and
Lorina Naci
Mackenzie Graham
Affiliation:
1Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, UK
Francesca Farina
Affiliation:
2Feinberg School of Medicine, Northwestern University, Chicago, USA
Craig W. Ritchie
Affiliation:
3Edinburgh Dementia Prevention, University of Edinburgh, Edinburgh, UK
Brian Lawlor
Affiliation:
4Trinity College Institute of Neuroscience, School of Psychology, Trinity College Dublin, Dublin, Ireland and Global Brain Health Institute, Trinity College Dublin, Dublin, Ireland
Lorina Naci*
Affiliation:
4Trinity College Institute of Neuroscience, School of Psychology, Trinity College Dublin, Dublin, Ireland and Global Brain Health Institute, Trinity College Dublin, Dublin, Ireland
*
*Corresponding author. Email: NACIL@tcd.ie
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Abstract

A general obligation to make aggregate research results available to participants has been widely supported in the bioethics literature. However, dementia research presents several challenges to this perspective, particularly because of the fear associated with developing dementia. The authors argue that considerations of respect for persons, beneficence, and justice fail to justify an obligation to make aggregate research results available to participants in dementia research. Nevertheless, there are positive reasons in favor of making aggregate research results available; when the decision is made to do so, it is critical that a clear strategy for communicating results is developed, including what support will be provided to participants receiving aggregate research results.

Keywords

DementiaAlzheimer’s diseasebiomarkersimagingethicsresearch results
Type
Research Article
Information
Cambridge Quarterly of Healthcare Ethics , Volume 31 , Issue 4 , October 2022 , pp. 498 - 505
Copyright
© The Author(s), 2022. Published by Cambridge University Press

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References

Notes

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