Technical report: ethical and policy issues in genetic testing and screening of children

@article{Ross2013TechnicalRE,
  title={Technical report: ethical and policy issues in genetic testing and screening of children},
  author={Laine Friedman Ross and Howard M. Saal and Karen L David and Rebecca Rae Anderson},
  journal={Genetics in Medicine},
  year={2013},
  volume={15},
  pages={234-245}
}
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 technical report provides ethical justification and empirical data in support of the proposed policy recommendations regarding such practices in a myriad of settings.Genet Med 2013… 
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  • E. Clayton, L. Mccullough, For the Clinical Sequencing Exploratory Research (
  • Medicine
    The American journal of bioethics : AJOB
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TLDR
Content analysis of the statements of AAP and ACMG addresses how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and whether the guidelines conflict or come to different but compatible conclusions because they consider different testing scenarios.
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TLDR
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TLDR
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TLDR
The issues pertaining to next generation sequencing and individual results disclosure that may guide current and future research practices are considered.
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TLDR
An approach to genomic testing in children that is child-focused and flexibly applied, driven by a core clinical question is recommended, and the role that age and emerging capacity should play in these debates is examined.
Anticipating the Ethical Challenges of Psychiatric Genetic Testing
TLDR
Psychiatrists and other health professionals must be able to assist patients and families in making informed decisions about genetic testing and interpreting test results and filling their knowledge gaps on these issues will be a critical step towards meeting these responsibilities.
The Genetic Counselor’s Role in Managing Ethical Dilemmas Arising in the Laboratory Setting
TLDR
The historical context of ethical theory and its application to the field of genetic counseling is reviewed, with a focus on the role of the laboratory genetic counselor in managing ethical dilemmas.
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References

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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.
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Recommendations are made promoting informed participation by parents for newborn screening and limited use of carrier testing and testing for late-onset conditions in the pediatric population.
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The medical and psychosocial benefits and risks of predictive testing provide the context for analyzing the ethics of such testing.
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TLDR
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(2) In contrast, the working party believes that predictive testing for an adult onset disorder should generally not be undertaken if the child is healthy and there are no medical interventions
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