Physicians Committee Establishes Diversity in Dementia Research Working Group To Address Bias in Preclinical Research Strategies

On July 15th, 2019, the Physicians Committee established a working group during an inaugural roundtable at the Alzheimer’s Association International Conference.

Attendees included stakeholders from academia, health care, and advocacy organizations who outlined a path toward reducing the imbalanced health burden of dementia on people of color, women, and members of other historically underserved populations such as LGBTQ, rural, and low-income communities. The roundtable discussion highlighted the need for the Alzheimer’s research community to rethink current study designs, donor and participant engagement strategies, and funding priorities and policies. Participants strategized a plan for going forward and established a working group to implement recommendations.

In order to make preclinical research more representative of the full dementia patient population, the roundtable acknowledged the importance of gathering research subjects from diverse populations. Human-based approaches that aim to uncover the biological mechanisms and risk factors for dementia-related diseases such as genetic, epidemiological, and cell culture methods have indeed made significant advances. However, studies utilizing these methods often lack data from non-white research subjects. This failure lies with funding agencies, researchers, and clinicians alike.

Swati Mishra, PhD, from the University of Washington, studies the molecular consequences of SORL1 genetic variation—which is linked to a risk for Alzheimer’s disease—with human stem cells. She noted that although progress has been made in describing SORL1 dysfunction and developing therapies, the genetic variation that has been studied thus far has been biased toward populations of European ancestry. Members of the roundtable agree that this sort of study design could lead to the development of drugs that only work in patients of European ancestry. Gene Kopen, PhD, and Thomas Bell, MS, PhD, of the National Disease Research Interchange, added that, in addition to genetic samples and patient-derived stem cells, an unmet critical need of the biomedical research community is the ascertainment of primary human tissue samples from greater donor diversity.

In order to increase donor diversity, multiple members of the working group demonstrated resounding support for building trust with communities before asking for biosamples. Representing the LatinosAgainstAlzheimer’s network of UsAgainstAlzheimer’s, Jason Resendez emphasized the importance of culture-tailored education and outreach and the power of community-facing networks that utilize existing infrastructures. Stephanie Monroe from AfricanAmericansAgainstAlzheimer’s recommended that minority engagement centers of excellence be established in order to build institutional knowledge and strengthen community recruitment. Yakeel T. Quiroz, PhD, from Harvard’s Multicultural Alzheimer Prevention Program, pointed out that a primary barrier to Latino participation in research is language, stressing the need for bilingual testers, researchers, and clinicians.

Dementia researchers’ focus on animal model systems has worsened the problem of health disparities by creating frameworks of dementia that are largely devoid of human diversity elements. In order for biomedical discoveries to advance the health of everyone equitably, researchers must prioritize human-based approaches that elevate participation from historically underrepresented groups.