Ethical and Policy Issues in Genetic Testing and Screening of Children
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TLDR
This policy statement represents recommendations developed collaboratively by the American Academy of Pediatrics and the American College of Medical Genetics and Genomics with respect to many of the scenarios in which genetic testing and screening can occur.Abstract:
The genetic testing and genetic screening of children are commonplace. Decisions about whether to offer genetic testing and screening should be driven by the best interest of the child. The growing literature on the psychosocial and clinical effects of such testing and screening can help inform best practices. This policy statement represents recommendations developed collaboratively by the American Academy of Pediatrics and the American College of Medical Genetics and Genomics with respect to many of the scenarios in which genetic testing and screening can occur.read more
Citations
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ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing
Robert C. Green,Robert C. Green,Jonathan S. Berg,Wayne W. Grody,Sarah S. Kalia,Bruce R. Korf,Christa Lese Martin,Amy L. McGuire,Robert L. Nussbaum,Julianne M. O’Daniel,Kelly E. Ormond,Heidi L. Rehm,Heidi L. Rehm,Michael S. Watson,Marc S. Williams,Leslie G. Biesecker +15 more
TL;DR: It is recommended that laboratories performing clinical sequencing seek and report mutations of the specified classes or types in the genes listed here and encourage the creation of an ongoing process for updating these recommendations at least annually as further data are collected.
Journal ArticleDOI
Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents
Jeffrey R. Botkin,John W. Belmont,Jonathan S. Berg,Benjamin E. Berkman,Yvonne Bombard,Ingrid A. Holm,Howard P. Levy,Kelly E. Ormond,Howard M. Saal,Nancy B. Spinner,Benjamin S. Wilfond,Joseph D. McInerney +11 more
TL;DR: This statement represents current opinion by the ASHG on the ethical, legal, and social issues concerning genetic testing in children and a broad range of test technologies and their applications in clinical medicine and research.
Journal ArticleDOI
Technical report: Ethical and policy issues in genetic testing and screening of children
Laine Friedman Ross,Laine Friedman Ross,Laine Friedman Ross,Howard M. Saal,Karen L. David,Karen L. David,Rebecca Anderson +6 more
TL;DR: This technical report provides ethical justification and empirical data in support of the proposed policy recommendations regarding genetic testing and screening in a myriad of settings.
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Paediatric genomics: diagnosing rare disease in children.
TL;DR: For affected families, a better understanding of the genetic basis of rare disease translates to more accurate prognosis, management, surveillance and genetic advice; stimulates research into new therapies; and enables provision of better support.
Journal ArticleDOI
Autism genetics: opportunities and challenges for clinical translation.
Jacob A. S. Vorstman,Jeremy R. Parr,Daniel Moreno-De-Luca,Richard Anney,John I. Nurnberger,Joachim Hallmayer +5 more
TL;DR: Findings indicate that aetiological heterogeneity, variable penetrance and genetic pleiotropy are pervasive characteristics of autism genetics.
References
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James D. Watson,Francis Crick +1 more
TL;DR: The determination in 1953 of the structure of deoxyribonucleic acid (DNA), with its two entwined helices and paired organic bases, was a tour de force in X-ray crystallography and opened the way for a deeper understanding of perhaps the most important biological process.
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Revisiting Wilson and Jungner in the genomic age: a review of screening criteria over the past 40 years
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