"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.
"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.
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DOI：
10.3233/jad-230275
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发表时间：
2023
影响因子：
4
通讯作者：
Edwards, Dorothy Farrar
中科院分区：
文献类型：
--
作者：
Passmore, Susan Racine;Longhurst, Colin;Gerbitz, Abigail;Green-Harris, Gina;Norris, Nia;Edwards, Dorothy Farrar
尽管非裔美国人患阿尔茨海默病（AD）的风险最高，但他们在临床前生物标志物研究中的代表性显着不足。这对于涉及腰椎穿刺的研究尤其如此，因为即使对于那些支持研究的参与者，它也可能涉及更多的感知风险。了解支持AD研究的非裔美国参与者对涉及腰椎穿刺的生物标志物研究的独特关注。研究参与者是通过AD研究登记处联系的非洲裔美国成年人。我们采用了一种新的方法，用于创建假设的研究不同的因素。该方法的目的是收集潜在的模式，在决策方面的研究参与，但不同的实验小插曲设计，调查管理与一个附带的定性访谈，以确定参与者的意义归因于因素独立和相互结合。61名参与者每人回顾了三个随机选择的研究场景，并创建了他们的“理想”研究，包括腰椎穿刺。情景变量包括：研究结果的披露、研究人员的种族和民族身份、招聘方法和奖励金额。研究结果表明，AD研究结果的回报透明度是参与的最强驱动力，其次是研究人员的种族和奖励金额。招募方法对假设决策的影响有限。
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. To understand the unique concerns of African American participants regarding biomarker studies involving lumbar puncture who demonstrate support for AD research. 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. 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. 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.