Department of Psychiatry, Perlman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Department of Medical Ethics and Health Policy, Perelman School of Medicine and Co-Director of the Population Aging Research Center (PARC), University of Pennsylvania, Philadelphia, PA, USA.
J Alzheimers Dis. 2023;92(3):729-740. doi: 10.3233/JAD-220507.
Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) research has advanced gene and biomarker technologies to aid identification of individuals at risk for dementia. This innovation is a lynchpin in development of disease-modifying therapies. The emerging science could transform outcomes for patients and families. However, current limitations in the racial representation and inclusion of racial diversity in research limits the relevance of these technologies: AD/ADRD research cohorts used to define biomarker cutoffs are mostly White, despite clinical and epidemiologic research that shows Black populations are among those experiencing the greatest burdens of AD/ADRD. White cohorts alone are insufficient to characterize heterogeneity in disease and in life experiences that can alter AD/ADRD's courses. The National Institute on Aging (NIA) has called for increased racial diversity in AD/ADRD research. While scientists are working to implement NIA's plan to build more diverse research cohorts, they are also seeking out opportunities to consider race in AD/ADRD research. Recently, scientists have posed two ways of including race in AD/ADRD research: ancestry-based verification of race and race-based adjustment of biomarker test results. Both warrant careful examination for how they are impacting AD/ADRD science with respect to specific study objectives and the broader mission of the field. If these research methods are not grounded in pursuit of equity and justice, biases they introduce into AD/ADRD science could perpetuate, or even worsen, disparities in AD/ADRD research and care.
阿尔茨海默病和相关痴呆症(AD/ADRD)的研究已经推动了基因和生物标志物技术的发展,以帮助识别痴呆症高危人群。这一创新是开发疾病修正疗法的关键。新兴科学可能会改变患者和家庭的结局。然而,目前在研究中代表性不足以及缺乏种族多样性,限制了这些技术的相关性:用于定义生物标志物截止值的 AD/ADRD 研究队列主要是白人,尽管临床和流行病学研究表明,黑人是受 AD/ADRD 影响最大的人群之一。仅使用白人队列不足以描述疾病和生活经历的异质性,而这些异质性可能会改变 AD/ADRD 的进程。美国国家老龄化研究所(NIA)呼吁在 AD/ADRD 研究中增加种族多样性。虽然科学家们正在努力实施 NIA 的计划,以建立更多样化的研究队列,但他们也在寻找机会考虑 AD/ADRD 研究中的种族问题。最近,科学家们提出了两种在 AD/ADRD 研究中纳入种族的方法:基于祖先的种族验证和基于种族的生物标志物检测结果调整。这两种方法都需要仔细研究它们如何影响 AD/ADRD 科学,特别是针对特定的研究目标和该领域的更广泛使命。如果这些研究方法不是以追求公平和正义为基础,那么它们引入 AD/ADRD 科学中的偏见可能会加剧或恶化 AD/ADRD 研究和护理中的差异。