“I Want to Know Everything ...  ”: The Return of Research Results and the Importance of Transparency in the Acceptability of Lumbar Punctures for African American Older Adults

Article type: Research Article

Authors: Passmore, Susan Racine^{a; b; *} | Longhurst, Colin^c | Gerbitz, Abigail^a | Green-Harris, Gina^{d; e} | Norris, Nia^{e; f} | Edwards, Dorothy Farrar^{a; e; g}

Affiliations: [a] Collaborative Center for Health Equity, Institute for Clinical and Translational Research, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA | [b] School of Nursing, University of Wisconsin, Madison, WI, USA | [c] Department of Biostatistics and Medical Informatics, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA | [d] Center for Community Engagement and Health Partnerships, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA | [e] Department of Medicine, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA | [f] Wisconsin Alzheimer’s Institute, School of Medicine and Public Health, University of Wisconsin, Madison, WI, USA | [g] Department of Kinesiology, School of Education, University of Wisconsin, Madison, WI, USA

Correspondence: [*] Correspondence to: Susan Racine Passmore, PhD, Institute for Clinical and Translational Research, School of Medicine and Public Health, University of Wisconsin, Madison 750 Highland Ave, Madison, WI 52726, USA. Tel.: +1 608 265 9429; E-mail: passmore2@wisc.edu.

Abstract: Background:Although African Americans experience the highest risk of Alzheimer’s disease (AD), they are dramatically underrepresented in preclinical biomarker research. This is especially true for studies involving lumbar puncture as it may involve more perceived risk even for those participants who are otherwise supportive of research. Objective:To understand the unique concerns of African American participants regarding biomarker studies involving lumbar puncture who demonstrate support for AD research. Methods:Study participants were African American adults contacted through an AD research registry. We employed a novel method used to create hypothetical research studies varying on a set number of factors. The method is designed to collect potential patterns in decision making regarding research participation but differs from experimental vignette design in that the survey is administered with an accompanying qualitive interview to determine the meaning participants ascribe to factors independently and in conjunction with one another. Results:Sixty-one participants each reviewed three randomly selected research scenarios and created their “ideal” study involving lumbar puncture. Scenario variables included: disclosure of research results, racial and ethnic identity of the researcher, recruitment method, and amount of incentive. Conclusion:Findings indicate that transparency in the return of AD research results to be the strongest driver of participation, followed by race of the researcher and amount of incentive. Recruitment method had limited impact on hypothetical decision making.

Keywords: Alzheimer’s disease, Black or African American, ethics, health, health equity

DOI: 10.3233/JAD-230275

Journal: Journal of Alzheimer's Disease, vol. 95, no. 2, pp. 663-675, 2023