Table 1.

Selected official position statements by leading professional societies restricting predictive genetic testing by appealing to the child’s future autonomy or right to an open future.

Professional Society	Years Active	Relevant Section
U.K. Clinical Genetics Society	1994–2010	The principle of “respect for autonomy” entails that “formal genetic testing should generally wait until the ‘children’ request such tests for themselves, as autonomous adults.2
American Society for Human Genetics & American College of Medical Genetics	1995–2015	“If the medical or psychosocial benefits of a genetic test will not accrue until adulthood, as in the case of carrier status or adult-onset diseases, genetic testing generally should be deferred…[with exceptions limited to adolescents who meet standards of competence, voluntariness, and adequate understanding of information]…The unique potential of presymptomatic genetic testing to predict a child’s future should be approached with great caution.”3
American Academy of Pediatrics	2001–2013	Predictive genetic testing “inappropriately eliminates the possibility of future autonomous choice by the person”; thus, “pediatricians should decline requests from parents or guardians …until the child has the capacity to make the choice.”4
Canadian Paediatric Society	2003-Present	There is a “basic right for an individual to decide whether one wants genetic testing that will reveal genetic information…For genetic conditions that will not present until adulthood (susceptibility or predictive testing), testing should be deferred until the child is competent to decide whether they want the information.”5
European Society for Human Genetics	2009-Present	“Presymptomatic and predictive genetic testing of minors for conditions with adult-onset is acceptable only if preventive actions (eg preventive surgery or early detection aimed at therapeutic interventions) can be initiated before adulthood. Otherwise presymptomatic and predictive genetic testing in minors for adult-onset disorders should be deferred until the person has the maturity and competence to understand the nature of the decision and its implications.”6
National Society of Genetic Counselors	2012-Present	“[NSGC] encourages deferring predictive genetic testing of minors for adult-onset conditions when results will not impact childhood medical management or significantly benefit the child. Predictive testing should optimally be deferred until the individual has the capacity to weigh the associated risks, benefits, and limitations of this information, taking his/her circumstances, preferences, and beliefs into account to preserve his/her autonomy and right to an open future.”7
Human Genetics Society of Australasia	2014-Present	“Pre-symptomatic and predictive testing in children and young people who cannot yet make a mature decision about testing removes the possibility for them to make an autonomous decision as an adult. It is for this reason that it is recommended that pre-symptomatic and predictive testing be limited to individuals assessed to have sufficient maturity to make an informed decision about testing.”8