Rethinking the "open future" argument against predictive genetic testing of children

• Published in: Genetics in medicine Vol. 21; no. 10; pp. 2190 - 2198
• Main Authors: Garrett, Jeremy R, Lantos, John D, Biesecker, Leslie G, Childerhose, Janet E, Chung, Wendy K, Holm, Ingrid A, Koenig, Barbara A, McEwen, Jean E, Wilfond, Benjamin S, Brothers, Kyle
• Format: Journal Article
• Language: English
• Published: United States Elsevier Limited 01.10.2019
• Subjects: Child; Child, Preschool; Decision Making - ethics; Disclosure; Forecasting; Genetic Predisposition to Disease; Genetic testing; Genetic Testing - ethics; Human Rights - ethics; Humans; Parents; pediatric genetic testing; secondary findings; right to an open future; adult-onset conditions; children’s interests
• ISSN: 1098-3600; 1530-0366; 1530-0366
• DOI: 10.1038/s41436-019-0483-4

Professional consensus has traditionally discouraged predictive genetic testing when no childhood interventions can reduce future morbidity or mortality. However, advances in genome sequencing and accumulating evidence that children and families cope adequately with predictive genetic information have weakened this consensus. The primary argument remaining against testing appeals to children's "right to an open future." It claims that the autonomy of the future adult is violated when others make an irreversible choice to obtain or disclose predictive genetic information during childhood. We evaluate this argument and conclude that children's interest in an open future should not be understood as a right. Rather an open future is one significant interest to weigh against other important interests when evaluating decisions. Thus, predictive genetic testing is ethically permissible in principle, as long as the interests promoted outweigh potential harms. We conclude by offering an expanded model of children's interests that might be considered in such circumstances, and present two case analyses to illustrate how this framework better guides decisions about predictive genetic testing in pediatrics.