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Factors related to willingness to participate in AD biomarker studies that disclose personal results
Author(s) -
Erickson Claire M,
Jonaitis Erin M,
Chin Nathaniel A,
Gleason Carey E,
Johnson Sterling C,
Clark Lindsay R
Publication year - 2021
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1002/alz.049445
Subject(s) - biomarker , medicine , psychology , family medicine , clinical psychology , gerontology , biochemistry , chemistry
Abstract Background With improved temporal identification and characterization of AD biomarkers, disclosure of personal biomarker information will become increasingly relevant. Understanding participant factors related to willingness to learn such information may inform relationship‐building with communities, especially those historically excluded from biomedical research, and aid the development of guidelines for safe, effective disclosure. Method We developed a 30‐minute phone survey to gather information from Black and W participants on willingness to enroll in different types of biomarker disclosure studies (general AD biomarker, PET, CSF, and blood‐based), reasons for enrolling, and potential outcomes following a hypothetical positive result. Data were collected from cognitively healthy participants (n=334, mean age=64.8±7.7, 45% Black) enrolled in the Wisconsin ADRC or Wisconsin Registry for Alzheimer’s Prevention. Using linear regression, we assessed the relationship between willingness to enroll in various hypothetical AD biomarker disclosure studies and age, sex, race, education, family dementia history, trust in medical research, concern about developing AD, and experiences of discrimination. Result Trust in medical research and race were significant predictors of willingness to enroll in all the hypothetical AD biomarker disclosure studies, with higher willingness associated with greater trust in research and with White racial identification. We did not find a significant difference in trust in medical research between Black and White participants (t(df)=‐1.42(299.13), p.14). In secondary analyses, we included covariate interactions with race to assess racial differences in their effects. We found that the gender gap for Black participants in willingness to enroll in an AD CSF disclosure study was larger than that for White participants, but other effects were nonsignificant. Conclusion These results suggest that trust in medical research is related to willingness to enroll in AD biomarker studies that disclose results to participants. As race is a social construct representing a combination of ancestry and experience, we plan to further explore the relationship between study enrollment willingness and race through a mixed‐methods approach examining quantitative and qualitative data. Understanding factors related to participant enrollment willingness may be crucial for developing culturally informed best practices for personal biomarker disclosure and in engaging and bolstering representation from historically minoritized groups into AD biomarker research.