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Public Health Genomics and Precision Health Knowledge Base (v9.0)
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Precision Health Database|Search|Public Health Genomics and Precision Health Knowledge Base (PHGKB)
Last data update: Apr 18, 2024
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Newborn screening [original query]>>Ethical, Legal and Social Issues (ELSI)[Category]
Exploration of clinical and ethical issues in an expanded newborn metabolic screening programme: a qualitative interview study of healthcare professionals in Hong Kong.
O M Y Ngan et al. Hong Kong Med J 2024
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Past as Prologue: Predicting Potential Psychosocial–Ethical Burdens of Positive Newborn Screens as Conditions Propagate
LW ush et al, IJNS, February 2024
Newborn Screening for Neurodevelopmental Disorders May Exacerbate Health Disparities.
Sarah A Sobotka et al. Pediatrics 2023
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Newborn Screening Is on a Collision Course with Public Health Ethics.
Currier Robert J et al. International journal of neonatal screening 2022 8(4)
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Australian healthcare professionals' perspectives on the ethical and practical issues associated with genomic newborn screening.
Cao Michelle et al. Journal of genetic counseling 2022
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Psychological and Ethical Challenges of Introducing Whole Genome Sequencing into Routine Newborn Screening: Lessons Learned from Existing Newborn Screening.
Ulph Fiona et al. The New bioethics : a multidisciplinary journal of biotechnology and the body 2022 1-23
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Ethical Considerations for Equitable Access to Genomic Sequencing for Critically Ill Neonates in the United States.
P Fishler Kristen et al. International journal of neonatal screening 2022 8(1)
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Select Ethical Aspects of Next-Generation Sequencing Tests for Newborn Screening and Diagnostic Evaluation of Critically Ill Newborns.
Sen Kuntal et al. International journal of neonatal screening 2021 7(4)
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Ethical Issues in Care and Treatment of Neuronal Ceroid Lipofuscinoses (NCL)-A Personal View.
Kohlschütter Alfried et al. Frontiers in neurology 2021 12692527
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Ethical implications of next-generation sequencing and the future of newborn screening.
White-Corey Shelley et al. Journal of the American Association of Nurse Practitioners 2021 33(7) 492-495
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Ethical and Psychosocial Implications of Genomic Newborn Screening
HL Levy, IJNS, January 2021
Ethical and Psychosocial Implications of Genomic Newborn Screening.
Levy Harvey L, et al. International journal of neonatal screening 2021 1 0. (1)
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Ethical Issues Surrounding Newborn Screening.
Howell R Rodney et al. International journal of neonatal screening 2021 Jan 7(1)
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Feasibility and acceptability of early infant screening for sickle cell disease in Lagos, Nigeria-A pilot study.
Oluwole Esther O et al. PloS one 2020 15(12) e0242861
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Psychological Impact of NBS for CF.
Chudleigh Jane et al. International journal of neonatal screening 2020 Jun 6(2) 27
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Regulatory landscape of providing information on newborn screening to parents across Europe.
Franková Vera et al. European journal of human genetics : EJHG 2020 Oct
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Ethical Questions Concerning Newborn Genetic Screening.
Esquerda Montse et al. Clinical genetics 2020 Aug
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A Review of Rare Disease Policies and Orphan Drug Reimbursement Systems in 12 Eurasian Countries.
Czech Marcin et al. Frontiers in public health 2019 7416
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Exome sequencing in newborns with congenital deafness as a model for genomic newborn screening: the Baby Beyond Hearing project.
Downie Lilian et al. Genetics in medicine : official journal of the American College of Medical Genetics 2020 Jan
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Inequities in newborn screening: Race and the role of medicaid ☆ .
Sohn Heeju et al. SSM - population health 2019 Dec 9100496
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Genome Sequencing in Newborns Raises Ethical Issues
NY Times, November 2019
Ethical Issues in Newborn Sequencing Research: The Case Study of BabySeq
LF Ross et al, Pediatrics, November 2019
Consent for newborn screening: screening professionals' and parents' views.
Ulph F et al. Public health 2019 Nov 178151-158
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What is in a Name? Parent, Professional and Policy-Maker Conceptions of Consent-Related Language in the Context of Newborn Screening.
Nicholls Stuart G et al. Public health ethics 2019 Jul 12(2) 158-175
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What You Should Know About Insurance Before You Have Genetic Testing
E Matloff, Forbes, June 25, 2019
Genomic malpractice: what healthcare providers need to know to reduce the risk
J McCarthy, Precision Medicine Advisor, June 10, 2019
Ethical issues with testing and treatment for Krabbe disease.
Ehmann Paul et al. Developmental medicine and child neurology 2019 May
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Leveraging Evidence-Based Public Policy and Advocacy to Advance Newborn Screening in California.
Bronstein Max G et al. Pediatrics 2019 Jan
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Eugenics Redux: "Reproductive Benefit" as a Rationale for Newborn Screening.
Paul Diane B et al. The Hastings Center report 2018 Jul 48 Suppl 2S12-S13
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The Legal Dimensions of Genomic Sequencing in Newborn Screening.
Zacharias Rachel L et al. The Hastings Center report 2018 Jul 48 Suppl 2S39-S41
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Page last reviewed:
Feb 1, 2024
Page last updated:
Apr 18, 2024
Content source:
Public Health Genomics Branch in the Division of Blood Disorders and Public Health Genomics
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National Center on Birth Defects and Developmental Disabilities
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