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Informing cognitively healthy research participants of modifiable dementia risk factors: Ethical implications

Graham, Mackenzie; Rossor, Martin; Lawlor, Brian; Naci, Lorina; (2024) Informing cognitively healthy research participants of modifiable dementia risk factors: Ethical implications. Journal of Alzheimer's Disease 10.1177/13872877241292370. (In press). Green open access

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Abstract

Research has shown that up to 40% of dementia incidence can be accounted for by 12 modifiable lifestyle risk factors. However, the predictive value of these risks factors at an individual level remains uncertain. Ethical considerations that are typically invoked with respect to the disclosure of individual research results-beneficence and non-maleficence, respect for autonomy, and justice-do not provide conclusive justification for, or against, disclosing modifiable risk factors for future dementia to cognitively unimpaired research participants. We argue for a different approach to evaluating the disclosure of individual-level modifiable risk factors for dementia. Rather than focusing on individual-level disease prediction and prevention, we suggest that disclosure should be evaluated based on the impact of behavioral and lifestyle changes on current brain health.

Type: Article
Title: Informing cognitively healthy research participants of modifiable dementia risk factors: Ethical implications
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/13872877241292370
Publisher version: http://dx.doi.org/10.1177/13872877241292370
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Alzheimer's disease, brain health, dementia, modifiable, research ethics, research participants, risk factors
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neurodegenerative Diseases
URI: https://discovery.ucl.ac.uk/id/eprint/10200913
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