Parental Authority, Future Autonomy, and Assessing Risks of Predictive Genetic Testing in Minors

• Published in: Journal of bioethical inquiry 2009-09, Vol.6 (3), p.379-385
• Main Authors: Boyce, A., Borry, P.
• Format: Article
• Language: English
• Subjects: Autonomy; Bioethics; Diagnosis; Ethics; Genetic disorders; Genetic testing; Human chromosome abnormalities; Medical Law; Medicine; Medicine & Public Health; Risk; Theory of Medicine/Bioethics; Youth
• ISSN: 1176-7529; 1872-4353; 1872-4353
• DOI: 10.1007/s11673-009-9167-0

The debate over the genetic testing of minors has developed into a major bioethical topic. Although several controversial questions remain unanswered, a degree of consensus has been reached regarding the policies on genetic testing of minors. Recently, several commentators have suggested that these policies are overly restrictive, too narrow in focus, and even in conflict with the limited empirical evidence that exists on this issue. We respond to these arguments in this paper, by first offering a clarification of three key concepts—autonomy of the minor, future autonomy, and parental authority—which must be disentangled. We then respond to the arguments by noting the uncertainty of the value of predictive genetic information, and by assessing the psychosocial risks still involved in genetic testing of minors, which are also largely unknown. We conclude that the current consensus position is justified at this stage, in light of the predictions of harm resulting from genetic testing of minors that have not been adequately proved to be unwarranted.