Let’s Not Repeat History’s Mistakes: Two Cautions to Scientists on the Use of Race in Alzheimer’s Disease and Alzheimer’s Disease Related Dementias Research
Affiliations: [a]
Department of Psychiatry, Perlman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
| [b]
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
Correspondence:
[*]
Correspondence to: Shana Stites, PsyD, MS, MA, University of Pennsylvania, 3615 Chestnut Street, Philadelphia, PA 19104, USA. E-mail: stites@UPenn.edu.
Abstract: 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.
