Getting the public involved upstream in priority setting in the form of consensus-building activities in Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) research is necessary to make that research more impactful for people affected. AD/ADRD research should focus on questions related to significant truths that society cares about.
RicoVZelinskyMFordPJ, et al.Recommended approaches to sharing individual research results in Alzheimer's disease research: a multidisciplinary expert Delphi consensus. J Alzheimers Dis2025; 108: 703–718.
2.
GoswamiSHartzSMOliverA, et al.Research participant interest in learning results of biomarker tests for Alzheimer disease. JAMA Netw Open2025; 8: e252919.
3.
van der MolenLHBoeninkMvan LenteH, et al.Changing definitions of disease: transformations in the diagnostic criteria for Alzheimer's disease. Alzheimers Dement2025; 21: e70133.
4.
SmedingaMBunnikEMRichardE, et al.The framing of “Alzheimer's disease": differences between scientific and lay literature and their ethical implications. Gerontologist2021; 61: 746–755.
5.
DalyTMastroleoI. Reducing confusion surrounding expert conceptions of Alzheimer's and dementia: a practical analysis. J Neuropsychol2025; 19: 158–164.
6.
EpsteinS. Impure science: AIDS, activism, and the politics of knowledge. Berkeley: University of California Press, 1996. Retrieved from the Library of Congress, https://lccn.loc.gov/96016805.
7.
FarombiTArulogunONicholsM, et al.The role of community advisory boards in enhancing recruitment and retention in Alzheimer's disease and related dementia research in Africa: experience from the READD-ADSP study. Alzheimers Dement2025; 21: e70529.
8.
ByrdGSMcInerneyK. Recruitment and retention for Alzheimer's disease diversity genetic cohorts in the ADSP (READD-ADSP). Alzheimers Dement2023; 19: e074860.
Van GoolWASiebrandJAFBrayneC, et al.Evidence gap in blood biomarkers for Alzheimer's disease. Br Med J2025; 390: e084781.
11.
KarlawishJ. Please, don’t fly me to the moon. Am J Bioeth2021; 21: 20–22.
12.
IntemannK. Distinguishing between legitimate and illegitimate values in climate modeling. Eur J Philos Sci2015; 5: 217–232.
13.
CoutellecL. Ethics and scientific integrity in biomedical research. Debates on Trust, Robustness, and Relevance. In: IphofenR (eds) Handbook of research ethics and scientific integrity. Cham, Switzerland: Springer, 2020, pp.1–14. doi: 10.1007/978-3-319-76040-7_36-1.
14.
KitcherP. Science, Truth, and Democracy. New York City: NY: Oxford University Press, 2001.
15.
JongsmaKSpaethESchicktanzS. Epistemic injustice in dementia and autism patient organizations: an empirical analysis. AJOB Empir Bioeth2017; 8: 221–233.
16.
LipnickiDMVellaASJiangJ, et al.Addressing global diversity in dementia research with the COSMIC collaboration. Neuroscience2025; 582: 180–194.
17.
DalyT. The iceberg of dementia risk: empirical and conceptual arguments in favor of structural interventions for brain health. Cereb Circ Cogn Behav2023; 6: 100193.