To Test or Not to Test? A Dilemma in Prenatal Testing for an Adult-Onset Genetic Condition

Pediatric genetic testing for adult-onset genetic conditions is controversial and generally not recommended because of concerns about protecting a future child’s autonomy to decide as an adult whether to know their genetic status. Yet, preimplantation genetic testing of embryos and prenatal diagnosis of fetuses for adult-onset genetic conditions are routinely offered to at-risk prospective parents when parents intend to select unaffected embryos or terminate an affected pregnancy to avoid having a child with the condition. These commentaries consider a case in which expecting parents (1 of whom is at risk) request prenatal testing for Huntington disease (HD), a genetic, progressive, adult-onset neurological condition, but do not intend to terminate the pregnancy if affected. Such situations highlight the tension between protecting a potential child’s interest in an open future and honoring prospective parents’ reproductive autonomy and ability to make decisions that they determine to be in the best interests of their family and future child. The first commentary highlights ethical distinctions in the case from obstetric and pediatric perspectives. The second commentary considers the role of parental reason-giving in shifting ethical reasoning and deliberation between prenatal and pediatric frames of reference. The third commentary, from the perspective of an HD community member, offers reflections on the breadth of personal and family experiences of HD that may inform choices about prenatal testing. The fourth commentary considers clinicians’ process-related obligations while counseling families about prenatal testing for adult-onset conditions to argue for a shared decision-making model.