Law, ethics and genomics part 2: The ethical landscape of genomic incidental findings - Autonomy, paternalism, and the search for consensus - 20/08/26
, H. Saund-Matharu bAbstract |
The proliferation of clinical genome and exome sequencing has generated a host of complex ethical dilemmas that challenge the core tenets of modern bioethics. This article provides a comprehensive analysis of the ethical landscape surrounding the management of genomic incidental findings (IFs). It examines the central philosophical conflict between the principles of patient autonomy and clinical beneficence, which manifests most acutely in the contentious debate over a “right not to know”.
The authors critically evaluate the divergent policy recommendations from major international bodies, including the American College of Medical Genetics and Genomics (ACMG) and the European Society of Human Genetics (ESHG), revealing a fractured global consensus on the proper handling of these findings.
Using the discovery of non-paternity as a case study, the report explores the limits of clinical responsibility when medical findings have profound social consequences. The authors argue that in the absence of a universal ethical agreement, the most defensible approach is one that moves the ethical focus from the act of disclosure to the process of consent. A robust, dynamic, and proactive consent framework that empowers genuine, granular patient choice is the most viable path to navigating the ethical complexities of the genomic era.
Le texte complet de cet article est disponible en PDF.Keywords : Ethics, Incidental findings, Genomics, Law
Plan
| ☆ | This article is part two of a two-part series on law, ethics and genomics. Part one focuses on the legal duty of care in genomic incidental findings. |
Vol 34
Article 101316- 2026 Retour au numéroBienvenue sur EM-consulte, la référence des professionnels de santé.
L’accès au texte intégral de cet article nécessite un abonnement.
Déjà abonné à cette revue ?
