A Framework for Unrestricted Prenatal Whole-Genome Sequencing: Respecting and Enhancing the Autonomy of Prospective Parents
American Journal of Bioethics 17 (1):3-18 (2017)
AbstractNoninvasive, prenatal whole genome sequencing may be a technological reality in the near future, making available a vast array of genetic information early in pregnancy at no risk to the fetus or mother. Many worry that the timing, safety, and ease of the test will lead to informational overload and reproductive consumerism. The prevailing response among commentators has been to restrict conditions eligible for testing based on medical severity, which imposes disputed value judgments and devalues those living with eligible conditions. To avoid these difficulties, we propose an unrestricted testing policy, under which prospective parents could obtain information on any variant of known significance after a careful informed consent process that uses an interactive decision aid to deliver a mandatory presentation on the purposes, techniques, and limitations of genomic testing, as well as optional resources for reflection and consultation. This process would encourage thoughtful, informed deliberation...
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Citations of this work
Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?Michelle J. Bayefsky & Benjamin E. Berkman - 2022 - American Journal of Bioethics 22 (2):4-22.
The Shifting Landscape of Prenatal Testing: Between Reproductive Autonomy and Public Health.Vardit Ravitsky - 2017 - Hastings Center Report 47 (s3):S34-S40.
Just Choice: A Danielsian Analysis of the Aims and Scope of Prenatal Screening for Fetal Abnormalities.Greg Stapleton, Wybo Dondorp, Peter Schröder-Bäck & Guido de Wert - 2019 - Medicine, Health Care and Philosophy 22 (4):545-555.
Providing Unrestricted Access to Prenatal Testing Does Not Translate to Enhanced Autonomy.Vardit Ravitsky, Francois Rousseau & Anne-Marie Laberge - 2017 - American Journal of Bioethics 17 (1):39-41.
A Brave New World of Bespoke Babies?Tom Shakespeare - 2017 - American Journal of Bioethics 17 (1):19-20.
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