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Rare Diseases
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Narrative Bioethics and Popular Conceptions of Genetic Disorder

Objective: To apply techniques from narrative ethics to develop a theory that can help explain the public’s beliefs concerning genetic disorders and the patients affected by them.

The aim of narrative bioethics is to improve medical decision-making by incorporating our knowledge of people’s experiences and how they create meaning for themselves and others. This involves analyzing the language used by patients, healthcare providers, and other stakeholders including the general public. While there have been numerous academic studies on the way genetics and genomics are explained to the public, very little attention has fallen specifically on genetic disorders, which make up 80% of rare diseases. In order to meet the unmet need, this project represents an analysis of how those diseases and the patients affected by them are seen by the public, as well as how these beliefs affect individual choices and the evolution of health policy as a whole.

Based on a literature review, we will begin with an explanation of narrative bioethics theory and a concise history of the popular perceptions of genetic disorders with a particular focus on rare diseases. We will examine the language used by scientists and the biotechnology industry, as well as how they affect the way laypersons think about and categorize diseases. Through a systematic comparison of previous surveys, roundtables and audience studies, we will explore the most frequently-held images of genetic disorder with respect to recurring themes, relations to other disease characteristics, and consequences for identity, coping mechanisms, and treatment decisions.

Finally, we will synthesize these findings to offer a new perspective regarding the ways people see their relationships to these diseases, especially given their rarity, severity and occurrence in children. The resulting theory is used to examine previous proposals for revising unhelpful or counterproductive labels and terminology, with the end goal of promoting practices for a “biopsychosocial” approach to healthcare that pays more attention to the psychological and social aspects of treating sorts of illnesses.