Addressing Bias and Barriers to Genetic Testing: 2022 RARE Health Equity Summit

November 15, 2022

Addressing Bias and Barriers to Genetic Testing for Underrepresented Populations was a session at the 2022 RARE Health Equity Summit.

Genetics and genomics research historically has not been inclusive of populations of color. Individuals of European descent were the most accessible population to include in the Human Genome Project at the time because of who was represented in research and clinical trials. It’s time to start over with a more inclusive population in genetic testing. This session talks about how.

The RARE Health Equity Summit, hosted by Global Genes in partnership with the Rare Disease Diversity Coalition (RDDC) convenes all stakeholders in the rare disease community to identify collaborative efforts to address inequities in the care of patients with rare diseases, specifically focusing on reducing disparities, discrimination, and biases felt by patient communities. The 2022 Health Equity Summit was held in Atlanta, Georgia.

Lisa Toppin, MS, EdD
Global Vice President of Diversity and Inclusion, Ilumina

* Barbara Harrison, MS, CGC
Genetic Counselor, Howard University

* Ebony Madden, PhD
Program Director, Training, Diversity and Health Equity Office, National Human Genome Research Institute

* Zhanzhi (Mike) Hu, PhD
Cofounder and President, Project GUARDIAN

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