Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments

• Published in: Journal of medical ethics 2012-09, Vol.38 (9), p.519-524
• Main Authors: Mand, Cara, Gillam, Lynn, Delatycki, Martin B, Duncan, Rony E
• Format: Article
• Language: English
• Subjects: Adolescent medicine; Adolescents; Adults; Age of Onset; applied and professional ethics; availability of contraceptives to minors; Bioethics; children; Childrens rights; Content analysis; Diagnosis; Discourse ethics; Empirical evidence; Ethical aspects; Ethics; ethics committees/consultation; Ethics, Medical; Feature article; Genethics; genetic counselling/prenatal diagnosis; Genetic diseases; Genetic Diseases, Inborn - diagnosis; Genetic disorders; genetic information; Genetic Predisposition to Disease; Genetic screening; genetic screening/testing; Genetic testing; Genetic Testing - ethics; Humans; Huntington disease; Medical genetics; Minors; minors/parental consent; newborns and minors; paediatrics; Parents; predictive genetic testing; Predictive Value of Tests; research ethics; Risk Assessment - ethics; Safety and security measures; scientific research
• ISSN: 0306-6800; 1473-4257
• DOI: 10.1136/medethics-2011-100055

Predictive genetic testing is now routinely offered to asymptomatic adults at risk for genetic disease. However, testing of minors at risk for adult-onset conditions, where no treatment or preventive intervention exists, has evoked greater controversy and inspired a debate spanning two decades. This review aims to provide a detailed longitudinal analysis and concludes by examining the debate's current status and prospects for the future. Fifty-three relevant theoretical papers published between 1990 and December 2010 were identified, and interpretative content analysis was employed to catalogue discrete arguments within these papers. Novel conclusions were drawn from this review. While the debate's first voices were raised in opposition of testing and their arguments have retained currency over many years, arguments in favour of testing, which appeared sporadically at first, have gained momentum more recently. Most arguments on both sides are testable empirical claims, so far untested, rather than abstract ethical or philosophical positions. The dispute, therein, lies not so much in whether minors should be permitted to access predictive genetic testing but whether these empirical claims on the relative benefits or harms of testing should be assessed.