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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 25, 2024
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Records 1 - 29 (of 29 Records)
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Literacy[original query]>>Ethical, Legal and Social Issues (ELSI)[Category]
All you Need is Trust? Public Perspectives on Consenting to Participate in Genomic Research in the Sri Lankan District of Colombo.
Krishani Jayasinghe et al. Asian Bioeth Rev 2024 16(2) 281-302
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Ethical, legal, and social implications (ELSI) and challenges in the design of a randomized controlled trial to test the online return of cancer genetic research results to U.S. black women.
Catharine Wang et al. Contemp Clin Trials 2023 107309
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"What if" should precede "whether" and "how" in the social conversation around human germline gene editing.
Diewertje Houtman et al. J Community Genet 2023
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Integrating China in the international consortium for personalised medicine. a position paper on healthcare professionals' education and citizens' empowerment in personalised medicine.
Flavia Beccia et al. BMC Med Educ 2023 23(1) 438
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Public attitudes toward cloud computing and willingness to share personal health records (PHRs) and genome data for health care research in Japan.
Mayumi Kusunose et al. Human genome variation 2023 10(1) 11
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Can genomic research make a useful contribution to social policy?
Asbury Kathryn et al. Royal Society open science 2022 9(11) 220873
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Ethical considerations for precision psychiatry: A roadmap for research and clinical practice.
Fusar-Poli Paolo et al. European neuropsychopharmacology : the journal of the European College of Neuropsychopharmacology 2022 6317-34
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Integrating Ethics and Career Futures with Technical Learning to Promote AI Literacy for Middle School Students: An Exploratory Study.
Zhang Helen et al. International journal of artificial intelligence in education 2022 1-35
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[World Health Organization guidance Ethical and Governance of Artificial Intelligence for health and implications for China].
Wei B R et al. Zhonghua yi xue za zhi 2022 102(12) 833-837
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Who's afraid of genetic tests?: An assessment of Singapore's public attitudes and changes in attitudes after taking a genetic test.
Cheung Ross et al. BMC medical ethics 2022 23(1) 5
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Australian human research ethics committee members' confidence in reviewing genomic research applications.
Pysar Ryan et al. European journal of human genetics : EJHG 2021
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Regulating AI in Health Care: The Challenges of Informed User Engagement.
Kudina Olya et al. The Hastings Center report 2021
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Application of the community dialogues method to identify ethical values and priorities related to pharmacogenomics.
Determeyer Peggy et al. Pharmacogenomics 2021
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"This is my boy's health! Talk straight to me!" perspectives on accessible and culturally safe care among Aboriginal and Torres Strait Islander patients of clinical genetics services.
Dalach Philippa et al. International journal for equity in health 2021 20(1) 103
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My Data, My Choice? - German Patient Organizations' Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study.
Rauter Carolin Martina et al. Journal of medical systems 2021 45(4) 43
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The Meaning of Informed Consent: Genome Editing Clinical Trials for Sickle Cell Disease.
Desine Stacy et al. AJOB empirical bioethics 2020 Oct 1-13
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Demonstrating 'respect for persons' in clinical research: findings from qualitative interviews with diverse genomics research participants.
Kraft Stephanie A et al. Journal of medical ethics 2020 Oct
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Returning genomic results in a Federally Qualified Health Center: the intersection of precision medicine and social determinants of health.
Shaibi Gabriel Q et al. Genetics in medicine : official journal of the American College of Medical Genetics 2020 May
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How should health policy and practice respond to the increased genetic risk associated with close relative marriage? results of a UK Delphi consensus building exercise.
Salway Sarah et al. BMJ open 2019 Jul 9(7) e028928
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Genomic malpractice: what healthcare providers need to know to reduce the risk
J McCarthy, Precision Medicine Advisor, June 10, 2019
Postgenomics and genetic essentialism.
Dar-Nimrod Ilan et al. The Behavioral and brain sciences 2012 Oct 35(5) 362-3
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Genomic Literacy and Awareness of Ethical Guidance for Genomic Research in Sub-Saharan Africa: How Prepared Are Biomedical Researchers?
Ogunrin Olubunmi et al. Journal of empirical research on human research ethics : JERHRE 2018 Oct 1556264618805194
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A randomized controlled study of a consent intervention for participating in an NIH genome sequencing study.
Turbitt Erin et al. European journal of human genetics : EJHG 2018 Feb
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"Not Tied Up Neatly with a Bow": Professionals' Challenging Cases in Informed Consent for Genomic Sequencing.
Tomlinson Ashley N et al. Journal of genetic counseling 2016 Feb 25(1) 62-72
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Addressing ethical challenges in the Genetics Substudy of the National Eye Survey of Trinidad and Tobago (GSNESTT).
Roach Allana N et al. Applied & translational genomics 2016 Jun 96-14
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Using Genetic Technologies To Reduce, Rather Than Widen, Health Disparities.
Smith Caren E et al. Health affairs (Project Hope) 2016 Aug 35(8) 1367-73
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Privacy concerns raised by use of consumer genomics data in pharmaceutical research
E Topol, Genetic Literacy Project, January 2015
Shill gambit: Are geneticists who work for corporations less ethical than university researchers?
By Layla Katiraee, Genetic Literacy Project, Apr 14
Patient rights, risk, and responsibilities in the genetic era - a right to know, a right not to know, or a duty to know?
Domaradzki Jan et al. Ann Agric Environ Med 2015 Feb 24. 22(1) 156-162
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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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