HDI’s Medical Outreach Director, Stephanie Meredith, and colleagues, Dr. Kara Ayers Associate Director of the University of Cincinnati UCEDD; Dr. John Constantino, Director of the Washington University in St. Louis Intellectual and Developmental Disabilities Research Center, Dr. Igna Van den Veyver a leading Maternal Fetal Medicine Specialist from Baylor College of Medicine; Katie Stoll, Executive Director of the Genetic Support Foundation; and Dr. Marsha Michie, an anthropologist from Case Western Reserve University presented on the intersection of disability and genetics at the annual American Society of Human Genetics meeting in Houston, TX on Friday, October 18. This presentation was made possible by ASHG, in collaboration with the Association of University Centers and NICHD.
Approximately 300 medical professionals attended this session that discussed the value of technology, the need to remember the patients at the other end of tests, and the prioritization of our collective humanity. “Nothing About Us Without Us!”, was a core message of this presentation that identified tools and strategies to provide a forum for the voices of people with disabilities and their families, in conversations about genetics and medical practice. The meaningful dialogue focused on how to intentionally include the perspectives of people with genetic conditions (and their families) when creating guidelines and public policy–and to make that happen by acknowledging the painful history of stigmatization and abuse endured by people with disabilities throughout history and then building relationships with the medical community and putting humanity first. Continue reading
