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Background: Genetic testing is indicated for children with a personal or family history of hereditary cardiomyopathy to determine appropriate management and inform risk stratification for family members. The implications of a positive genetic result for children can potentially impact emotional well-being. Given the nuances of cardiomyopathy genetic testing for minors, this study aimed to understand how parents involve their children in the testing process and investigate the impact of genetic results on family dynamics., Methods: A survey was distributed to participants recruited from the Children's Cardiomyopathy Foundation and 7 North American sites in the Pediatric Cardiomyopathy Registry. The survey explored adolescent and parent participants' emotions upon receiving their/their child's genetic results, parent-child result communication and its impact on family functionality, using the McMaster Family Assessment Device., Results: One hundred sixty-two parents of minors and 48 adolescents who were offered genetic testing for a personal or family history of cardiomyopathy completed the survey. Parents whose child had cardiomyopathy were more likely to disclose positive diagnostic genetic results to their child ( P =0.014). Parents with unaffected children and positive predictive testing results were more likely to experience negative emotions about the result ( P ≤0.001) but also had better family functioning scores than those with negative predictive results ( P =0.019). Most adolescents preferred results communicated directly to the child, but parents were divided about whether their child's result should first be released to them or their child., Conclusions: These findings have important considerations for how providers structure genetic services for adolescents and facilitate discussion between parents and their children about results.

The introduction of psychiatric genetic evidence in court proceedings to terminate parental rights raises concerns that such information will result in misconceived assumptions about the child's mental health trajectory and unjust rulings on termination of parental rights. We conducted an online vignette-based survey with a nationally representative sample of adults from the general public ( n = 300 respondents) to assess their views on how evidence about a child's psychiatric genetic makeup may affect key decisions in termination proceedings. Our findings indicate that genetic evidence increased the child's labeling as having a psychiatric disorder, regardless of the presence of symptoms, treatment recommendations, evaluation of prescription medication, and beliefs in treatment efficacy. Genetic evidence alone did not affect whether participants would terminate parental rights, but participants who thought that the child did not have a psychiatric disorder were more likely to terminate in the presence of genetic test results. We conclude that psychiatric genetic evidence in termination proceedings may have unintended consequences, and that measures should be taken to ensure that it does not unfairly affect outcomes., (© 2021 American Academy of Psychiatry and the Law.)

Purpose: Embryo testing to improve pregnancy outcomes among individuals who are seeking assisted reproduction technologies is increasing. The purpose of this study was to assess decisional factors through in-depth interviews for why women would accept or decline preimplantation genetic testing for aneuploidy (PGT-A) with in vitro fertilization (IVF)., Methods: Semi-structured telephone interviews were conducted with 37 women who were offered PGT-A with IVF during the summer 2017. Interviews lasted on average 40 min and were audio-recorded, transcribed, and analyzed using a content analysis., Results: Results identified a number of decisional factors related to values about conception, disability, and pregnancy termination, past pregnancy experiences, optimism toward technology, and cost. Other key issues that were identified include the use of expanded carrier screening prior to IVF, maternal age, and limited education about PGT-A due to the complexity about education for IVF alone., Conclusion: There is a need to develop decision support tools for the increasing choices of genetic testing options for patients seeking IVF. Including patients' values, past pregnancy experiences and attitudes toward science into the decision-making process may help promote a more informed decision.

A 38-year-old woman is diagnosed with Li-Fraumeni syndrome, an autosomal dominant genetic condition that predisposes to a variety of cancers. The woman has an 11-year-old daughter. The geneticist recommends that the child be tested for the Li-Fraumeni genetic variant. The mother is concerned about the impact of testing and diagnosis on Karen's psychological well-being. She describes Karen as "highly strung" and as "a worrier." The child has been diagnosed with an anxiety disorder and is managed by a psychologist for counseling. The child is otherwise well. The mother requests that testing be done without disclosing it to the child by adding the test on to routine blood work done for another reason and requests that the results only be revealed if they are positive. Experts in genetics, law, and bioethics discuss whether it is permissible to test the child without her knowledge or assent., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

Whole genome and exome sequencing (WGS/WES) techniques raise hope for a new scale of diagnosis, prevention, and prediction of genetic conditions, and improved care for children. For these hopes to materialize, extensive genomic research with children will be needed. However, the use of WGS/WES in pediatric research settings raises considerable challenges for families, researchers, and policy development. In particular, the possibility that these techniques will generate genetic findings unrelated to the primary goal of sequencing has stirred intense debate about whether, which, how, and when these secondary or incidental findings (SFs) should be returned to parents and minors. The debate is even more pronounced when the subjects are adolescents, for whom decisions about return of SFs may have particular implications. In this paper, we consider the rise of "genomic citizenship" and the main challenges that arise for these stakeholders: adolescents' involvement in decisions relating to return of genomic SFs, the types of SFs that should be offered, privacy protections, and communication between researchers and adolescents about SFs. We argue that adolescents' involvement in genomic SF-related decisions acknowledges their status as valuable stakeholders without detracting from broader familial interests, and promotes more informed genomic citizens., (© 2016 American Society of Law, Medicine & Ethics.)

Since the inception of large‐scale human genome research, there has been much caution about the risks of exacerbating a number of socially dangerous attitudes linked to human genetics. These attitudes are usually labeled with one of a family of genetic or genomic "isms" or "ations" such as "genetic essentialism," "genetic determinism," "genetic reductionism," "geneticization," "genetic stigmatization," and "genetic discrimination." The psychosocial processes these terms refer to are taken to exacerbate several ills that are similarly labeled, from medical racism and psychological fatalism to economic exploitation and social exclusion. But as genomic information becomes more familiar in clinical and research settings as well as other life activities, do we need to continue to worry so much about this family of attitudes and their impact on existing problems? In genomics, the underlying anxiety has been that disclosure of genomic information will trigger a series of (seemingly unavoidable) negative responses that will affect individuals, their families, and their communities at large. The fundamental social challenges that hyperbolic genomic messaging, low genomic literacy, and "folk biology" help sustain remain to be addressed. If we hope to break the cycle of genomic isms and ations, we will have to get better at resisting overinterpretations of the relevance that genomics has for people's future potentials, ancestral vulnerabilities, community memberships, and ethnic affiliations. [ABSTRACT FROM AUTHOR]

The exponential growth of genetic knowledge and precision medicine research raises hopes for improved prevention, diagnosis, and treatment options for children with behavioral and psychiatric conditions. Although well-intended, this prospect also raise the possibility — and concern — that behavioral, including psychiatric genetic data would be increasingly used — or misused — outside the clinical context, such as educational settings. Indeed, there are ongoing calls to endorse a “personalized education” model that would tailor educational interventions to children's behavioral and psychiatric genetic makeup. This article explores the justifications for, and prospects and pitfalls of such endeavors. It considers the scientific challenges and highlights the ethical, legal, and social issues that will likely arise should behavioral genetic data become available (or be perceived as such) and are routinely incorporated in student education records. These include: when to disclose students' behavioral and psychiatric genetic profile; whose genomic privacy is protected and by whom; and how students' genetic data may affect education-related decisions. I argue that the introduction of behavioral genetics in schools may overshadow the need to address underlying structural and environmental factors that increase the risk for psychiatric conditions of all students, and that the unregulated use of student behavioral genetic profiles may lead to unintended consequences that are detrimental for individuals, families and communities. Relevant stakeholders — from parents and students to health professionals, educators, and policy-makers — ought to consider these issues before we forge ahead with a genomically informed education system. [ABSTRACT FROM AUTHOR]

The prospect of using behavioral genetic data in schools is gaining momentum in the U.S., with some scholars advocating for the tailoring of educational interventions to students' genetic makeup ("precision education"). Public perspectives on testing for and using behavioral genetic data in schools can affect policies but are unknown. We explored public views in the U.S. (n = 419) on key issues in precision education. The introduction of a child's behavioral genetic information regarding Attention-Deficit/Hyperactivity-Disorder was associated with beliefs that such data should be considered in educational planning for the child and increased medicalization, but also a belief in treatment efficacy. Most participants expressed interest in learning about children's behavioral genetic predispositions but would disapprove of testing without parental consent. Differences by participants' race, ethnicity and educational attainment were observed. Our findings indicate the public's complex understanding of genetic information and the challenges for wide implementation of precision education in the U.S. • First exploration of views of general public in the US about precision education. • High interest in voluntary testing of children for genetic predisposition to ADHD. • Genetic data on risk for ADHD increased interest in use of data in educational plan. • Race, ethnicity and education impact views on key issues in precision education. • Precision education faces scientific, philosophical and equity challenges. [ABSTRACT FROM AUTHOR]