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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)
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Last data update: Apr 18, 2024
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all[original query]>>Ethical, Legal and Social Issues (ELSI)[Category]
FDA Review of Radiologic AI Algorithms: Process and Challenges.
Kuan Zhang et al. Radiology 2024 310(1) e230242
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Public engagement with genomics.
Anna Middleton et al. Wellcome Open Res 2023 8310
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Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa.
Ayodele Jegede et al. medRxiv 2023
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Ethical Considerations in Clinical Trials for Rare Genetic Diseases: The Case of Huntington's Disease.
Adys Mendizabal et al. Am J Bioeth 2023 23(7) 94-96
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Ethics of digital therapeutics (DTx).
Refolo P et al. European review for medical and pharmacological sciences 2022 26(18) 6418-6423
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Legal Implications of Stroke Biobanking and Genomics Research in Sub-Saharan Africa.
Adigun Muyiwa et al. Journal of law and medicine 2022 29(2) 579-598
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Capacity-Building for Stroke Genomic Research Data Collection: The African Neurobiobank Ethical, Legal, and Social Implications Project Experience.
Uvere Ezinne O et al. Biopreservation and biobanking 2022
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Food and Drug Administration Lifts Clinical Hold on Pfizer Duchenne Muscular Dystrophy Gene Therapy Linked to Patient Death.
Philippidis Alex et al. Human gene therapy 2022 33(11-12) 573-576
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Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa.
Adigun Muyiwa et al. The theory and practice of legislation 2022 9(3) 404-424
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Ethical considerations in design and implementation of home-based smart care for dementia.
Hine Christine et al. Nursing ethics 2022 9697330211062980
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The good, the bad, and the utilitarian: attitudes towards genetic testing and implications for disability.
Maftei Alexandra et al. Current psychology (New Brunswick, N.J.) 2022 1-22
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Individualized Therapeutics Development for Rare Diseases: The Current Ethical Landscape and Policy Responses.
Bateman-House Alison et al. Nucleic acid therapeutics 2021
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An ethical analysis of divergent clinical approaches to the application of genetic testing for autism and schizophrenia.
Morris E et al. Human genetics 2021
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Guidelines for Conducting Ethical Artificial Intelligence Research in Neurology: A Systematic Approach for Clinicians and Researchers.
Chiang Sharon et al. Neurology 2021
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Controversy and Progress in Alzheimer's Disease - FDA Approval of Aducanumab.
Rabinovici Gil D et al. The New England journal of medicine 2021
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Unraveling the Ethical, Legal, and Social Implications of Neurobiobanking and Stroke Genomic Research in Africa: A Study Protocol of the African Neurobiobank for Precision Stroke Medicine ELSI Project.
Akinyemi Rufus O et al. International journal of qualitative methods 2020 19
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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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'That would be dreadful': The ethical, legal, and social challenges of sharing your Alzheimer's disease biomarker and genetic testing results with others.
Largent Emily A et al. Journal of law and the biosciences 2021 8(1) lsab004
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Obstetrics, genetics and litigation.
Milunsky Aubrey et al. Acta obstetricia et gynecologica Scandinavica 2021 Jan
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Whether, when, and how to communicate genetic risk to minors: 'I wanted more information but I think they were scared I couldn't handle it'.
Stuttgen Kelsey et al. Journal of genetic counseling 2020 Jul
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[Clinical Ethics in Hereditary Neuromuscular Diseases such as Duchenne Muscular Dystrophy].
Nakajima Takashi et al. Brain and nerve = Shinkei kenkyu no shinpo 2020 Jul 72(7) 753-766
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FDA orphan drug designations for lysosomal storage disorders - a cross-sectional analysis.
Garbade Sven F et al. PloS one 2020 15(4) e0230898
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Biobanking for Genomic and Personalized Health Research: Participant Perceptions and Preferences.
Barnes Rebecca et al. Biopreservation and biobanking 2020 Apr
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Rare inherited kidney diseases: an evolving field in Nephrology.
Cunha Mariana Faucz Munhoz da et al. Jornal brasileiro de nefrologia : 'orgao oficial de Sociedades Brasileira e Latino-Americana de Nefrologia 2020
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Pharmacogenetic Testing: The Ethics of Implementing in Clinical Practice for Chronic Pain Patients.
Fredrikson Karin M et al. Journal of pain & palliative care pharmacotherapy 2020 Jan 1-8
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Heritable Genome Editing: Who Speaks for "Future" Children?
Knoppers Bartha Maria et al. The CRISPR journal 2019 Oct 2(5) 285-292
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Is Genetic Medicine Making the World Less Fair?
L Hercher, the Nation, August 23, 2019
Genetic Testing: Who Owns Your Data?
Being Patient, August 2, 2019
Genetic-Testing Scam Targets Seniors And Rips Off Medicare
M Bailey, KHN News, July 31, 2019
Did CRISPR help - or harm - the first-ever gene-edited babies?
J Cohen, Science, August 1, 2019
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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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