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Predictive Genetic Testing of Children and the Role of the Best Interest Standard

Currents in Contemporary Bioethics

Published online by Cambridge University Press:  01 January 2021

Lainie Friedman Ross
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Extract

The genetic testing and screening of children has been fraught with controversy since Robert Guthrie developed the bacterial inhibition assay to test for phenylketonuria and advocated for rapid uptake of universal newborn screening in the early 1960s. Today with fast and affordable mass screening of the whole genome on the horizon, the debate about when and in what scenarios children should undergo genetic testing and screening has gained renewed attention. United States (US) professional guidelines — both the American College of Medical Genetics (ACMG)/American Society of Human Genetics (ASHG) statement (1995) and the American Academy of Pediatrics (AAP) Statement on the genetic testing of children (2001) and the new AAP and ACMG joint policy statement (2013) and technical report (2013) — as well as the old UK guidelines by the Working Part of the Clinical Genetics Society (1994) and the new United Kingdom (UK) guidelines by the British Society of Human Genetics (BSHG) (2010) all give the same answer: genetic testing and screening should only be done if it is in the child’s best interest.

Type
JLME Column
Information
Journal of Law, Medicine & Ethics , Volume 41 , Issue 4 , Winter 2013 , pp. 899 - 906
Copyright
Copyright © American Society of Law, Medicine and Ethics 2013

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Footnotes

Mark A. Rothstein serves as the section editor for Currents in Contemporary Bioethics. Professor Rothstein is the Herbert F. Boehl Chair of Law and Medicine and the Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine in Kentucky. ([email protected])

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