Predictors of Consent to Online and Genetic Research among Adults on the MindCrowd Cognitive Health Platform

MindCrowd is an online cognitive health platform that engages adults in a 10-min experience, including the paired-associates learning (PAL) test, a demographic survey, and an option to be contacted for future research. This study's objective was to identify factors associated with consent to research studies.

Adults from US zip codes, who joined MindCrowd from June 17, 2022 to December 31, 2024 and agreed to be contacted for future research, were eligible for the study. Outcomes included consent to online cognitive health surveys (MindCrowd-Expanded) and genetic testing for AD risk via mailed self-collection kit. Variables of interest included age, sex, race, ethnicity, education, socioeconomic vulnerability, family history of AD, and PAL test score. Consent was modeled using multivariable logistic regression, generating adjusted odds ratios (aOR), and 95% confidence intervals (CIs).

A total of 52,113 MindCrowd participants were study eligible - 19.1% consented to MindCrowd-Expanded and 9.5% to genetic testing. Compared with white individuals, black individuals had 58% and 75% lower odds of consenting to MindCrowd-Expanded [aOR = 0.42 (95% CI = 0.37-0.48)] and genetic testing [aOR = 0.25 (95% CI = 0.20-0.32)], respectively. Compared with non-Hispanic individuals, Hispanic individuals had 26% and 37% lower odds of consenting to MindCrowd-Expanded [aOR = 0.74 (95% CI = 0.68-0.80)] and genetic studies [aOR = 0.63 (95% CI = 0.56-0.71)], respectively.

Despite previous research demonstrating that black and Hispanic MindCrowd participants were more willing to be contacted for future research than white participants, findings from this study suggest hesitancy to consent to online cognitive aging research and genetic testing. A more intentional approach may be necessary to retain MindCrowd participants from underrepresented communities in cognitive research studies.