Perceptions about preclinical Alzheimer's disease biomarker collection procedure influences willingness to participate: Findings from an ethnoracially diverse study

Diane Carol Gooding; Carol A Van Hulle; Megan Zuelsdorff; Jordan P Lewis; Fabu P Carter; Hector Salazar; Shenikqua Bouges; Taryn T James; Alexander Gee; Carey E Gleason

doi:10.1177/13872877241307255

Perceptions about preclinical Alzheimer's disease biomarker collection procedure influences willingness to participate: Findings from an ethnoracially diverse study

J Alzheimers Dis. 2025 Jan 8:13872877241307255. doi: 10.1177/13872877241307255. Online ahead of print.

Authors

Diane Carol Gooding^{1

2

3}, Carol A Van Hulle^{3

4}, Megan Zuelsdorff⁵, Jordan P Lewis⁶, Fabu P Carter⁴, Hector Salazar^{3

4}, Shenikqua Bouges^{3

4

7}, Taryn T James^{3

4}, Alexander Gee⁸, Carey E Gleason^{3

4

9}

Affiliations

¹ Department of Psychology, UW-Madison, Madison, WI, USA.
² Department of Psychiatry, Schools of Medicine and Public Health, UW-Madison, Madison, WI USA.
³ Geriatrics and Gerontology, Department of Medicine, Schools of Medicine and Public Health, UW-Madison, Madison, WI, USA.
⁴ Wisconsin Alzheimer's Disease Research Center, UW-Madison, Madison, WI, USA.
⁵ School of Nursing, UW-Madison, Madison, WI, USA.
⁶ University of Minnesota Medical School, Duluth campus, MN, USA.
⁷ Madison VA GRECC, Middleton Memorial Hospital, Madison, WI, USA.
⁸ Nehemiah Center for Urban Leadership Development, Madison, WI, USA.
⁹ Wisconsin Alzheimer's Institute, Schools of Medicine and Public Health, UW-Madison, WI, USA.

PMID: 39772842
DOI: 10.1177/13872877241307255

Abstract

Background: Past research suggests that ethnoracialized groups differ in their willingness to engage in preclinical Alzheimer's disease (AD) research overall. Studies indicated that participation willingness was affected by attitudes toward research and perceived invasiveness of biomarker collection techniques. However, comparative quantitative studies are few, and minoritized groups are under-included.

Objective: In a cross-sectional online survey, we sought to explore community-based adults' willingness to engage in preclinical AD biomarker testing, comparing their attitudes about research and different types of biomarker procedures.

Methods: We conducted an online survey with a diverse group of participants. African American (AA), American Indian/Alaska Native (AI/AN), Latinx (LTX), and Non-Hispanic White (NHW) adults aged 26-90 were asked about their research attitudes, biomarkers, and willingness to participate in specific biomarker test procedures (i.e., brain imaging via PET scanning, blood draws, and cerebrospinal fluid collection by lumbar puncture). We also assessed participants' perceived safety, burden, and distress for each of the three biomarker collection methods. To understand the association between research willingness and ethnoracial identity, we ran linear regression models for each procedure, adjusting for age, gender, educational attainment, and attitudes toward research.

Results: The AA group expressed greater willingness to engage in biomarker testing involving blood draws than the NHW group. The AI/AN group was significantly less willing to undergo lumbar puncture than the NHW group; this difference remained after adjusting for various sociodemographic factors and research attitudes.

Conclusions: Respondents' willingness to engage in preclinical AD biomarker research was affected by their perceptions about the testing collection procedure.

Keywords: Alzheimer's disease; biomarker testing; blood-based biomarkers; brain scanning; lumbar puncture; race/ethnicity; research attitudes; research participation; testing willingness.