Balancing Genetics and Ethics in the Management of Rare Diseases
Advances in precision and personalized medicine hold promise for the diagnosis and treatment of rare diseases. However with these advances come the challenges of balancing personal information and protecting individuals using these technologies and participating in clinical research. Attendees to this event will learn about changes in regulatory oversight, new ways and new models to accelerate moving new therapies forward with smaller populations, how to empower families to drive health, wellness, and knowledge, and what ethical hurdles exist pertaining to information provided to the patient and family. We will also hear from a young high school student, living with a rare disease, on how she views the option of genetic testing. Our panel features the following individuals: •Linda Strause, PhD, Principal and Founder of Strategic Clinical Consultants •Barbara Binzak Blumenfeld, Shareholder in the Washington, DC food and drug law practice group at Buchanan Ingersoll & Rooney •Razelle Kurzrock, Director, Center for Personalized Cancer Therapy at University of California, San Diego Moores Cancer Center •Dawn Barry, Vice President of Applied Genomics at Illumina, where she leads market development and expansion strategies for early stage clinical, research, and industrial applications of genomics •Sophia Galdámez, High School Student-Athlete, Patient Advocate, 16 years of age and a sophomore at Francis Parker High School