Six Shibboleths about Ethical Issues in Gene Therapy for Hemophilia

Subject Matter Expert: The Patient's Perspective:
NHF recognizes the unique and important expertise patients have about their disorders. For that reason, we refer to them as subject matter experts or SMEs. This short presentation will provide the SME summit perspective with regards to hemophilia A and B.

Plenary: Six Shibboleths About Ethical Issues in Gene Therapy for Hemophilia:
This session will address common misconceptions about ethical issues in research on bleeding disorders, including the distinction between legally and morally valid consent; equal access to novel therapies; the use of democratic principles in developing policy; efficiency vs fairness in allocating scarce resources; and genetic manipulation of embryos.

Working Group Chair Summary:
Chairs for Working Group 1: Research Priorities for Hemophilia A and B, discuss their approach and questions identified.