A Human Rights Lens to Understanding the Concept of “Serious” Genetic Conditions
Year: 2024
Type: book-chapter
Abstract: The seriousness threshold is commonly found in laws, policies, and regulations around emerging genomic technologies. It is used often as a permissibility filter to ethically justify such technologies to improve health and reduce suffering from “serious” genetic conditions. However, the seriousness threshold remains vague in the context of point of care genetics. The ambiguity around when to invoke the seriousness threshold makes consistent and coherent application challenging and decision-making around what is “serious” arbitrary. In this chapter we aim to further elaborate on how a human rights-based approach (e.g. right to the highest attainable standard of health and the right to science), which Professor Bartha Knoppers has long advocated, in combination with objectivist and constructivist perspectives of health and disease, can help inform a common understanding of seriousness in the context of emerging genomic technologies. Taken together, these conceptual approaches capture the interplay between objective, quantifiable elements and the inextricable contextual or subjective elements of a genetic condition for a more actionable consideration of seriousness.
Source: Brill | Nijhoff eBooks
Authors: Erika Kleiderman, Vardit Ravitsky
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
OpenAlex ID: W4404218583