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

  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},
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… 
Ethical issues in pediatric genetic testing and screening
  • J. Botkin
  • Medicine
    Current opinion in pediatrics
  • 2016
The use of microarray and genome sequencing technologies is expanding in the care of children with the notion that the personal utility of test results, rather than clinical utility, may be sufficient to justify testing.
Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children
  • E. Clayton, L. Mccullough, For the Clinical Sequencing Exploratory Research (
  • Medicine
    The American journal of bioethics : AJOB
  • 2014
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.
Case analysis : Ethical issues in predictive genetic testing of minors for adult-onset hereditary conditions
Determining whether to perform predictive genetic testing in a minor for conditions of adult-onset should be guided by the potential outcomes that indicate that medical benefits obtained will outweigh the risks of testing, and preserving the confidentiality of the test result.
Ethical Considerations related to Genetic Testing in Infants and Children
The most important ethical issues identified in this study consisted of respecting individual autonomy, consent, disclosure of information, confidentiality and privacy as well as justice.
Ethical issues in the evaluation of adults with suspected genetic neuromuscular disorders
Informed consent is an important starting point for discussions between physicians and patients, but the counseling embedded in the informed consent process must be an ongoing part of subsequent interactions, including return of results and follow-up.
Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results.
The issues pertaining to next generation sequencing and individual results disclosure that may guide current and future research practices are considered.
Genomic Testing in The Paediatric Population: Ethical Considerations in Light of Recent Policy Statements
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
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
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.


Ethical and Policy Issues in Genetic Testing and Screening of Children
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.
Ethical issues with genetic testing in pediatrics.
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.
The case against preadoption genetic testing.
The medical and psychosocial benefits and risks of predictive testing provide the context for analyzing the ethics of such testing.
The ethics of preadoption genetic testing.
This article examines the current consensus view recently advanced by the American College of Medical Genetics and The American Society of Human Genetics on when pediatric testing is ethically permissible and argues that the consensus view does not adequately recognize the special ethical responsibilities that arise in the preadoption context.
A systematic review of literature about the genetic testing of adolescents.
Results suggest that adolescents and their families have relatively positive attitudes about genetic testing and may experience both harms and benefits from testing.
Parental attitudes regarding newborn screening of PKU and DMD
Professional guidelines that proscribe predictive testing for untreatable childhood onset conditions should be re‐examined in light of consumer attitudes, according to focus groups.
Molecular genetic testing in pediatric practice: A subject review. Committee on Genetics.
The purposes of this subject review are to provide background information on molecular genetic tests, to describe specific testing modalities, and to discuss some of the benefits and risks specific to the pediatric population.
Predictive Genetic Testing for Conditions that Present in Childhood
  • L. Ross
  • Medicine, Psychology
    Kennedy Institute of Ethics journal
  • 2002
The question of whether it is ethical to perform predictive testing and screening of newborns and young children for conditions that present later in childhood is examined and is concluded in favor of parental discretion for predictive genetic testing, but against state-sponsored predictive screening for Conditions that do not fulfill public health screening criteria.
The genetic testing of children. Working Party of the Clinical Genetics Society (UK)
  • A. Clarke
  • Medicine, Psychology
    Journal of medical genetics
  • 1994
(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