Fear of dementia and public sharing of research results.

Graham M. Farina F, Ritchie C, Lawlor B, Naci L.

Cambridge Quarterly of Healthcare Ethics. 31: 4, 498–505 (2022)

DOI: https://doi.org/10.1017/S0963180122000408

Summary

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.

Detecting cognitive changes in preclinical Alzheimer’s disease: a review of its feasibility.

Mortamais M, Ash JA, Harrison J, Kaye J, Kramer J, Randolph C, Pose C, Albala B, Ropacki M, Ritchie CW, Ritchie K.
Alzheimer’s & dementia: the journal of the Alzheimer’s Association. 2017
10.1016/j.jalz.2016.06.2365

The clinical picture of Alzheimer’s disease in the decade before diagnosis: clinical and biomarker trajectories.

Ritchie K, Carrière I, Berr C, Amieva H, Dartigues JF, Ancelin ML, Ritchie CW.
The Journal of clinical psychiatry. 2016
10.4088/JCP.15m09989

Designing prevention programmes to reduce incidence of dementia: prospective cohort study of modifiable risk factors.

Ritchie K, Carrière I, Ritchie CW, Berr C, Artero S, Ancelin ML.
BMJ. 2010
PMC2917002