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  1. Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children.Ellen Wright Clayton, Laurence B. McCullough, Leslie G. Biesecker, Steven Joffe, Lainie Friedman Ross, Susan M. Wolf & For the Clinical Sequencing Exploratory Research Group - 2014 - American Journal of Bioethics 14 (3):3-9.
    American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines conflict or (...)
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  • Fetal information as shared information: using NIPT to test for adult-onset conditions.Michelle Taylor-Sands & Hilary Bowman-Smart - 2021 - Monash Bioethics Review 39 (Suppl 1):82-102.
    The possibilities of non-invasive prenatal testing (NIPT) are expanding, and the use of NIPT for adult-onset conditions may become widely available in the near future. If parents use NIPT to test for these conditions, and the pregnancy is continued, they will have information about the child’s genetic predisposition from birth. In this paper, we argue that prospective parents should be able to access NIPT for an adult-onset condition, even when they have no intention to terminate the pregnancy. We begin by (...)
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  • Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments: Figure 1.Cara Mand, Lynn Gillam, Martin B. Delatycki & Rony E. Duncan - 2012 - Journal of Medical Ethics 38 (9):519-524.
    Predictive genetic testing is now routinely offered to asymptomatic adults at risk for genetic disease. However, testing of minors at risk for adult-onset conditions, where no treatment or preventive intervention exists, has evoked greater controversy and inspired a debate spanning two decades. This review aims to provide a detailed longitudinal analysis and concludes by examining the debate's current status and prospects for the future. Fifty-three relevant theoretical papers published between 1990 and December 2010 were identified, and interpretative content analysis was (...)
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  • Parents' experiences of newborn screening for genetic susceptibility to type 1 diabetes.Nikki J. Kerruish - 2011 - Journal of Medical Ethics 37 (6):348-353.
    Advances in genomic medicine have lead to debate about the potential inclusion of genetic tests for susceptibility to common complex disorders in newborn screening programmes. Empirical evidence concerning psychosocial reactions to genetic testing is a crucial component of both ethical debate and policy development, but while there has been much speculation concerning the possible psychosocial impact of screening newborns for genetic susceptibilities, there remains a paucity of data. The aim of the study reported here is to provide some of this (...)
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  • Parental authority, future autonomy, and assessing risks of predictive genetic testing in Minors.A. Boyce & P. Borry - 2009 - Journal of Bioethical Inquiry 6 (3):379-385.
    The debate over the genetic testing of minors has developed into a major bioethical topic. Although several controversial questions remain unanswered, a degree of consensus has been reached regarding the policies on genetic testing of minors. Recently, several commentators have suggested that these policies are overly restrictive, too narrow in focus, and even in conflict with the limited empirical evidence that exists on this issue. We respond to these arguments in this paper, by first offering a clarification of three key (...)
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  • Parents perspectives on whole genome sequencing for their children: qualified enthusiasm?J. A. Anderson, M. S. Meyn, C. Shuman, R. Zlotnik Shaul, L. E. Mantella, M. J. Szego, S. Bowdin, N. Monfared & R. Z. Hayeems - 2017 - Journal of Medical Ethics 43 (8):535-539.
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