Abstract
Large-scale sequencing information may provide a basis for genetic tests for predisposition to common disorders. In this study, participants in the Coriell Personalized Medicine Collaborative (N = 53) with a personal and/or family history of Major Depressive Disorder or Bipolar Disorder were interviewed based on the Health Belief Model around hypothetical intention to test one’s children for probability of developing a mood disorder. Most participants (87 %) were interested in a hypothetical test for children that had high (“90 %”) positive predictive value, while 51 % of participants remained interested in a modestly predictive test (“20 %”). Interest was driven by beliefs about effects of test results on parenting behaviors and on discrimination. Most participants favored testing before adolescence (64 %), and were reluctant to share results with asymptomatic children before adulthood. Participants anticipated both positive and negative effects of testing on parental treatment and on children’s self-esteem. Further investigation will determine whether these findings will generalize to other complex disorders for which early intervention is possible but not clearly demonstrated to improve outcomes. More information is also needed about the effects of childhood genetic testing and sharing of results on parent–child relationships, and about the role of the child in the decision-making process.Electronic supplementary materialThe online version of this article (doi:10.1007/s10897-014-9710-y) contains supplementary material, which is available to authorized users.
Highlights
The primary motivation for molecular genetic research on bipolar disorder (BPD) and major depressive disorder (MDD) is to determine how genetic variation influences predisposition to illness, providing targets for improved treatment and perhaps prevention
Mood disorders are only partially heritable (60–80 % for BPD, 35–40 % for MDD based on twin studies [Merikangas et al 2002]), and it is unclear whether highly predictive tests can be developed, but it appears likely that large-scale sequencing-based information will permit the development of some form of risk profiling for common complex disorders
This view is reflected in the recent American College of Medical Genetics and Genomics report on genetic testing of children (Ross et al 2013), which suggests that the negative psychosocial effects of genetic test information on children and adolescents may have been overstated in older literature (Wade et al 2010), and that decisions about predispositional genetic testing may be based on multiple factors that determine the child’s “best interest.”
Summary
The primary motivation for molecular genetic research on bipolar disorder (BPD) and major depressive disorder (MDD) is to determine how genetic variation influences predisposition to illness, providing targets for improved treatment and perhaps prevention. Mood disorders often start during childhood or adolescence, and treatment outcomes are highly variable, there are reports that early interventions using individual, family- or school-based therapy might improve the course of illness in children with early symptoms (Garber et al 2009; Miklowitz and Chang 2008). These findings support the view of some parents that they could provide a more protective environment for at-risk children. This view is reflected in the recent American College of Medical Genetics and Genomics report on genetic testing of children (Ross et al 2013), which suggests that the negative psychosocial effects of genetic test information on children and adolescents may have been overstated in older literature (Wade et al 2010), and that decisions about predispositional genetic testing (for disorders with decreased penetrance and without definitive treatment) may be based on multiple factors that determine the child’s “best interest.”
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