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Public Health Genomics and Precision Health Knowledge Base (v9.0)
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Last data update: Apr 25, 2024
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Whole genome sequencing[original query]>>Ethical, Legal and Social Issues (ELSI)[Category]
Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal
Informed consent for whole genome sequencing in mainstream clinics: logistical constraints and possible solutions
A Chaouch et al, EJHG, January 4, 2024
Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.
Susan M Wolf et al. Annual review of genomics and human genetics 2023
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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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A roadmap to increase diversity in genomic studies.
Fatumo Segun et al. Nature medicine 2022
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Parental Access to Children's Raw Genomic Data in Canada: Legal Rights and Professional Responsibility.
Beauvais Michael J S et al. Frontiers in genetics 2021 12535340
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Genetic Research Using Archival Tissue: Ethical, Social, and Legal Considerations in the United Arab Emirates.
Almarzooqi Saeeda et al. Asian bioethics review 2018 10(3) 219-230
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Please give me a copy of my child’s raw genomic data
L Chad et al, NPJ Genomic Medicine, February 17, 2021
Parents, their children, whole exome sequencing and unsolicited findings: growing towards the child's future autonomy.
Tibben Aad et al. European journal of human genetics : EJHG 2021 Jan
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Reflections on the cost of "low-cost" whole genome sequencing: framing the health policy debate.
Caulfield Timothy et al. PLoS biology 2013 Nov 11(11) e1001699
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Governing the futures of non-invasive prenatal testing: An exploration of social acceptability using the Delphi method.
Dupras Charles et al. Social science & medicine (1982) 2020 Mar 112930
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Managing the Unimaginable: Biobank Participant Views on Reconsent for Whole Genome Sequencing of Stored Biospecimens.
Sutton Erica J et al. Biopreservation and biobanking 2019 Mar
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Factors complicating the informed consent process for whole exome sequencing in neonatal and pediatic intensive care units.
Diamonstein Callie J et al. Journal of genetic counseling 2019 Feb
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Beyond medical actionability: Public perceptions of important actions in response to hypothetical genetic testing results.
Seiffert David J et al. Journal of genetic counseling 2019 Feb
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Return of individual genomic research results: are laws and policies keeping step?
Thorogood Adrian, et al. European journal of human genetics : EJHG 2019 4 0. (4) 535-546
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Ethical conundrums in pediatric genomics.
Rotz Seth J et al. Hematology. American Society of Hematology. Education Program 2018 Nov 2018(1) 301-306
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Resisting Paternalism in Prenatal Whole-Genome Sequencing.
Rhodes Rosamond et al. The American journal of bioethics : AJOB 2017 17(1) 35-37
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Response to Open Peer Commentaries on "A Framework for Unrestricted Prenatal Whole-Genome Sequencing: Respecting and Enhancing the Autonomy of Prospective Parents".
Chen Stephanie C et al. The American journal of bioethics : AJOB 2017 17(1) W1-W3
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A New Era, New Strategies: Education and Communication Strategies to Manage Greater Access to Genomic Information.
Lewis Megan A et al. The Hastings Center report 2018 Jul 48 Suppl 2S25-S27
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[Ethical dilemmas in a general practitioner's clinic due to incidental findings resulting from whole genome sequencing].
Wouters Roel H P et al. Nederlands tijdschrift voor geneeskunde 2018 Jun 162
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Consent and participation in the 100,000 Genomes Project public attitudes
Genomics England, July 18, 2018
Incidental or secondary findings: an integrative and patient-inclusive approach to the current debate.
Saelaert Marlies et al. European journal of human genetics : EJHG 2018 Jul
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Ethical Implications of Rapid Whole-Genome Sequencing in Neonates.
Bell Susan Givens et al. Neonatal network : NN 2018 Jan 37(1) 42-44
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Genomics England's implementation of its public engagement strategy: Blurred boundaries between engagement for the United Kingdom's 100,000 Genomes project and the need for public support.
Samuel Gabrielle Natalie et al. Public understanding of science (Bristol, England) 2017 Dec 963662517747200
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Ethical issues with newborn screening in the genomics era.
Tarini Beth A et al. Annual review of genomics and human genetics 2012 13381-93
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Readability of informed consent forms for whole-exome and whole-genome sequencing.
Niemiec Emilia et al. Journal of community genetics 2017 Aug
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The elusive ideal of inclusiveness: lessons from a worldwide survey of neurologists on the ethical issues raised by whole-genome sequencing.
Hurlimann Thierry et al. BMC medical ethics 2017 Apr 18(1) 28
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Whole genome sequencing in children: ethics, choice and deliberation.
Newson Ainsley J et al. Journal of medical ethics 2017 Jan
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Genomic Test Results and the Courtroom: The Roles of Experts and Expert Testimony.
Ramos Edward et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2016 Mar 44(1) 205-15
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The challenge of consent in clinical genome-wide testing.
Burke Katherine et al. Archives of disease in childhood 2016 Apr
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Page last reviewed:
Feb 1, 2024
Page last updated:
Apr 25, 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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