Explore the complex balance between expert guidance and patient autonomy in genomics research and medicine through this 57-minute panel discussion hosted by the National Human Genome Research Institute. Delve into ethical frameworks for genetic counseling, examine the challenges faced by marginalized communities in genomic research, and gain insights into how social and historical contexts shape patients' needs. Learn from expert panelists as they discuss strategies for researchers and healthcare providers to engage patients and participants in decision-making about their health and data. Gain valuable perspectives on navigating the tension between professional expertise and individual autonomy in biomedical research and clinical practice.
Genetic Paternalism: Striking the Balance Between Expert Perspective and Patient Autonomy
National Human Genome Research Institute via YouTube
Overview
Syllabus
- Introduction
- An ethical framework for directiveness in genetic counseling practice Leila Jamal
- Sickle Cell Disease: A Marginalized Community in the Genomic Spotlight Ashley Buscetta
- Patient perspectives: how social and historical contexts shape patients’ needs Candace Henley
- Q&A Session
Taught by
National Human Genome Research Institute
