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  1. Whose Odyssey Is It? Family‐Centered Care in the Genomic Era.Jeffrey P. Brosco - 2018 - Hastings Center Report 48 (S2):20-22.
    Despite a century of progress in medical knowledge, many diagnostic odysseys end in disappointment, especially when the child has a developmental disorder. In cases of autism and intellectual disability, relatively few children receive a specific diagnosis, and virtually none of those diagnoses lead to a specific medical treatment. Whole‐genome or ‐exome sequencing offers a quantum leap in the diagnostic odyssey, in that we will always learn something from sequencing—sometimes much more than families bargained for, as discussed elsewhere in this special (...)
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  • Should We Aim to Create a Perfect Healthy Utopia? Discussions of Ethical Issues Surrounding the World of Project Itoh’s Harmony.Atsushi Asai, Taketoshi Okita, Motoki Ohnishi & Seiji Bito - 2020 - Science and Engineering Ethics 26 (6):3249-3270.
    To consider whether or not we should aim to create a perfect healthy utopia on Earth, we focus on the SF novel Harmony, written by Japanese writer Project Ito, and analyze various issues in the world established in the novel from a bioethical standpoint. In the world depicted in Harmony, preserving health and life is a top priority. Super-medicine is realized through highly advanced medical technologies. Citizens in Harmony are required to strictly control themselves to achieve perfect health and must (...)
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  • When Less is More: Lessons for Expanded Carrier Screening from Newborn Sequencing Research.Josephine Johnston - 2023 - American Journal of Bioethics 23 (7):118-120.
    In 2013, the U.S. National Institutes of Health funded four large interdisciplinary research projects exploring the “implications, challenges and opportunities associated with the possible use of g...
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  • Storing paediatric genomic data for sequential interrogation across the lifespan.Christopher Gyngell, Fiona Lynch, Danya Vears, Hilary Bowman-Smart, Julian Savulescu & John Christodoulou - forthcoming - Journal of Medical Ethics.
    Genomic sequencing (GS) is increasingly used in paediatric medicine to aid in screening, research and treatment. Some health systems are trialling GS as a first-line test in newborn screening programmes. Questions about what to do with genomic data after it has been generated are becoming more pertinent. While other research has outlined the ethical reasons for storing deidentified genomic data to be used in research, the ethical case for storing data for future clinical use has not been explicated. In this (...)
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  • Qualitative Research on Expanded Prenatal and Newborn Screening: Robust but Marginalized.Rachel Grob - 2019 - Hastings Center Report 49 (S1):72-81.
    If I told you that screening technologies are iteratively transforming how people experience pregnancy and early parenting, you might take notice. If I mentioned that a new class of newborn patients was being created and that particular forms of parental vigilance were emerging, you might want to know more. If I described how the particular stories told about screening in public, combined with parents’ fierce commitment to safeguarding their children’s health, make it difficult for problematic experiences with screening to translate (...)
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