The SAGE Handbook of Healthcare Ethics is an influential collection of work by leading scholars on the fundamental and emerging themes which define healthcare ethics. This authoritative Handbook brings together experts with backgrounds in philosophy, sociology, law, public policy and the health professions and reflects the increasing impact of globalization and the dynamic advances in the fields of bioscience and genetics, which keep ethics at the centre of debates about the future direction of healthcare. Combining international and interdisciplinary perspectives, the Handbook provides a cutting-edge account of debates in five key areas: Health Care Ethics in an Era of Globalization; Beginning and End of Life; Vulnerable Populations; Research Ethics and Technologies; Public Health and Human Rights
Chapter 23: Orphan Diseases
Defining Orphan Diseases: Rare vs Neglected
While the term ‘orphan diseases’ is a technical one defined in health policy literature, it is worth reminding ourselves in the context of healthcare ethics of the common uses of the term ‘orphan’. The primary meaning, derived from the Greek term orphanos is one bereft of a parent or parents. This is important in healthcare terms, because of the high numbers of orphans in some, especially war-torn, countries, whose healthcare needs may not even be identified let alone met. To this primary meaning, the secondary meaning ‘bereft of protection’ is clearly related. Again, however, in the context of healthcare ethics it is important to remember there may be significant healthcare issues and needs that are not appropriately ...