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

IF 3 3区医学 Q3 GERIATRICS & GERONTOLOGY

Gerontology Pub Date : 2025-09-25 DOI:10.1159/000548419

Katherine D Ellingson, William J Degnan, Azmat Sidhu, Darcey Lynn, Julia G Saborio, Megan Johnson, Grace M Leito, Carolina Carrasco, Carol A Barnes, David W Coon, Zhao Chen, Matthew Huentelman

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引用次数: 0

Abstract

Introduction: MindCrowd is an online cognitive health platform that engages adults in a 10-minute 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.

Methods: Adults from US zip codes, who joined MindCrowd from 06/17/2022-12/31/2024 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 (CI).

Results: 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.

Conclusion: 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.

查看原文本刊更多论文

在MindCrowd认知健康平台上，成年人同意在线和基因研究的预测因素。

简介：MindCrowd是一个在线认知健康平台，让成年人参与10分钟的体验，包括配对学习（PAL）测试、人口调查和未来研究的联系选项。本研究的目的是确定与同意研究相关的因素。方法：来自美国邮政编码的成年人，于2022年6月17日至2024年12月31日加入MindCrowd，并同意为未来的研究联系，符合研究条件。结果包括同意在线认知健康调查（MindCrowd扩展）和通过邮寄的自我收集试剂盒进行AD风险基因检测。感兴趣的变量包括年龄、性别、种族、民族、教育、社会经济脆弱性、AD家族史和PAL测试分数。使用多变量逻辑回归对同意度进行建模，生成调整优势比（aOR）和95%置信区间（CI）。结果：52,113名MindCrowd参与者符合研究条件- 19.1%同意MindCrowd扩展，9.5%同意基因检测。与白人个体相比，黑人个体同意MindCrowd扩展[aOR=0.42(95% CI=0.37-0.48)]和基因测试[aOR=0.25(95% CI=0.20-0.32)]的几率分别低58%和75%。与非西班牙裔个体相比，西班牙裔个体同意MindCrowd Expanded [aOR=0.74(95% CI=0.68-0.80)]和基因研究[aOR=0.63(95% CI=0.56-0.71)]的几率分别低26%和37%。结论：尽管之前的研究表明，黑人和西班牙裔参与者比白人参与者更愿意为未来的研究联系，但这项研究的结果表明，他们在同意在线认知衰老研究和基因测试方面犹豫不决。在认知研究中，可能需要一种更有意识的方法来保留来自代表性不足社区的MindCrowd参与者。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Gerontology 医学-老年医学

CiteScore

6.00

自引率

0.00%

发文量

审稿时长

6-12 weeks

期刊介绍： In view of the ever-increasing fraction of elderly people, understanding the mechanisms of aging and age-related diseases has become a matter of urgent necessity. ''Gerontology'', the oldest journal in the field, responds to this need by drawing topical contributions from multiple disciplines to support the fundamental goals of extending active life and enhancing its quality. The range of papers is classified into four sections. In the Clinical Section, the aetiology, pathogenesis, prevention and treatment of agerelated diseases are discussed from a gerontological rather than a geriatric viewpoint. The Experimental Section contains up-to-date contributions from basic gerontological research. Papers dealing with behavioural development and related topics are placed in the Behavioural Science Section. Basic aspects of regeneration in different experimental biological systems as well as in the context of medical applications are dealt with in a special section that also contains information on technological advances for the elderly. Providing a primary source of high-quality papers covering all aspects of aging in humans and animals, ''Gerontology'' serves as an ideal information tool for all readers interested in the topic of aging from a broad perspective.