Diversity to discovery: Addressing health disparities in dementia research as a path to scientific breakthroughs, personalized treatment and community health: Prevention (nonpharmacological) / Other. (7th December 2020)

• Record Type: Journal Article
• Authors: Lam, Ann; Krebs, Catharine; Ohayon, Elan
• Is Part Of: Alzheimer's & dementia. Volume 16(2020)Supplement 10
• Page Start: n/a
• Page End: n/a
• Publication Date: 2020-12-07
• Subjects: Alzheimer's disease -- Periodicals; Alzheimer Disease -- Periodicals; Dementia -- Periodicals; Démence; Maladie d'Alzheimer; Périodique électronique (Descripteur de forme); Ressource Internet (Descripteur de forme); 616.83
• DOI: 10.1002/alz.046436
• Languages: English
• ISSNs: 1552-5260

Abstract

Abstract: Background: There has been growing recognition of health disparities and lack of diversity in neuroscience and the dementia field in particular. These issues manifest across multiple scales in research, clinical, and public policy domains. However, the degree to which various diversity issues and scales interconnect has been underestimated and mostly overlooked. Moreover, a focus on animal experimental systems has exasperated the problem by creating frameworks of dementia largely devoid of human diversity elements. Here we present analyses of national research resources (e.g., U.S. biobanks) and siloing of data to quantify and highlight the lack of diversity. We then forward human‐based research, clinical and public policy strategies that can help address diversity issues and help uncover foundational mechanisms across scales. Methods: The framework includes analyses of [1] publicly available demographic data in national tissue and biospecimen banks [2] recent biological‐focused mechanistic studies that examine risk factors [3] public policy on diversity and disparities in medical and care services research. Results: [1] Analyses of demographic data in biobanks revealed significant incongruencies in the availability of specimens for the most impacted minority groups in the United States. [2] Even in studies of genetic‐related risk factors of diverse populations, exclusion criteria made it such that mechanistic theories would be easily biased by the lack of training of researchers to the sensitivity of diversity‐related risk factors. [3] At public health and clinical trials level of investigation, researchers and Alzheimer's communities are rapidly developing more inclusive, diversity‐aware relationships and research approaches but these need to be increasingly connected to research domains to help provide biological insight into dementia pathogenesis and prevention. Conclusions: These analyses demonstrate the need for further implementation of diversity and disparities through human‐based research programs (e.g., genetic analysis, patient‐derived cell cultures, biospecimen studies, computational modeling, etc.), as well as greater transparency in funding allocations and policies that integrate complex diversity factors into mechanistic, phenomenology and community‐level studies of dementia. Human‐based preclinical approaches can all provide greater insights and new models for personalized prevention and intervention but will need to directly include diversity‐related elements in research design in order to forward discovery.