End-of-life issues in genetic disorders: literature and research directions.

Abstract

Part I of this report summarizes findings from a literature search on end of life in people with genetic disorders. There is a paucity of research on this topic; thus this article includes descriptive studies, clinical reviews, and case presentations. Part II describes the proceedings of a workshop to discuss end-of-life issues in people with genetic disorders. The workshop brought together clinicians, researchers, and people living with genetic disorders to discuss this topic. The purpose of this article is to summarize the literature and workshop proceedings to provide directions for future investigation in this important area.