DOI: 10.1002/alz.073154 ISSN: 1552-5260

“By Any Means Necessary”: Understanding the willingness of African‐American and American Indian/Alaska Native communities to engage in genetic and biomarker research: The UBIGR Study

Diane C. Gooding, Emre Umucu, Carol A. Van Hulle, Megan Zuelsdorff, Fabu P. Carter, Jordan P. Lewis, Shenikqua Bouges, Taryn T. James, Hector Salazar, Lytonia Floyd, James Bester, Carey E. Gleason
  • Psychiatry and Mental health
  • Cellular and Molecular Neuroscience
  • Geriatrics and Gerontology
  • Neurology (clinical)
  • Developmental Neuroscience
  • Health Policy
  • Epidemiology



Research investigating underrepresented groups’ willingness to engage in research has largely relied on qualitative research and/or specialized samples (e.g., patients’ first‐degree relatives). Moreover, extant quantitative studies include disproportionately small numbers of these participants. This investigation is from an ongoing project whose overall goal is to understand biomarker and genetic Alzheimer’s disease (AD) and schizophrenia research participation in underrepresented groups (UBIGR Study), to facilitate greater diversity in future biomarker research and clinical trials. We extended knowledge by including community‐based participants, more racialized participants, and utilizing quantitative methods.


We administered an online questionnaire to 1444 adults. Focusing exclusively on data pertaining to AD detection, we assessed demographic characteristics as well as participants’ views on dementia, research, and genetic and biomarker testing. We tested our conceptual model (Figure 1) with structural equation modeling (SEM; SPSS AMOS). Our model consisted of demographic covariates (gender, education, family history of AD dementia), racial‐ethnic identity group, knowledge about AD, stigma, willingness to undergo any type of AD biomarker testing (outcome variable). Not implying white to be the standard, we created a BIPOC variable (Black, Indigenous, Person of Color) to examine differences based on Black/African American and American Indian/Alaska Native vs. White identity. A stigma score was derived from 5 questions. The knowledge score was based on 2 questions. The specific survey item used as the outcome measure asked for agreement with the statement: “I would be willing to undergo any type of testing necessary if it was the only way to find out if I was at risk for AD before there were any symptoms,” answered on a Likert scale (1 = strongly disagree – 7 = strongly agree)


Participants were mostly male and middle‐aged (Table 1). Path analysis revealed an excellent model fit, χ2(6, N = 1444) = 14.203. See Figure 2 for paths and factor loadings.


1. BIPOC participants in our nonpatient, non‐research sample were less willing to undergo testing than White participants. 2. Stigma and knowledge regarding AD are influential and modifiable factors underlying research willingness. Findings indicate need for outreach and engagement programs to occur before attempting research recruitment, particularly with BIPOC populations.

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