Podcast: Importance of Diversity in Clinical Trials and Genetic Testing

Holland & Knight's Public Policy & Regulation Group is proud to partner with the Rare Disease Diversity Coalition (RDDC) for a three-part podcast series highlighting diverse perspectives on genetic testing and kidney disease. RDDC brings together health and diversity advocates, rare disease specialists and industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. This series, co-hosted by Senior Policy Advisor Shawna Watley and Advocacy Relations Professional and RDCC Consultant Deanna Darlington, lifts up important voices from the field and educates listeners about the experiences of those living with rare diseases. Special thanks to Vertex Pharmaceuticals and Travere Therapeutics for their sponsorship and support of this podcast.

The first episode in this series features a discussion with M.D., Vice President, Value & Development Consulting for Evidera Dr. Jonca Bull and Clinical Genetic Counselor at Children's National Hospital Dr. Heather Hain. This discussion focuses on the importance of diversity in clinical trials and genetic testing in the context of research and development, and for patients receiving care. Dr. Bull shares active steps the RDDC is taking to help tear down existing barriers in the rare patient community, particularly those living in diverse communities. Dr. Hain provides insight into what is being done to increase genetic testing for patients of color, and the importance of telemedicine. During the episode, the group also emphasizes how having equity and diversity in the patient ecosystem helps break down mistrust in genetic testing, research and clinical trials. 

Listen to Part 2: Battling Cystinosis: Perspectives from a Doctor and a Patient Turned Advocate

Listen to Part 3: Achieving Health Equity: One Bite at a Time