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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 23, 2024
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Informed consent [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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On the ethics of informed consent in genetic data collected before 1997.
Martin Zieger et al. Nature 2024 627(8003) 271
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Mainstreaming genomic testing: pre-test counselling and informed consent.
Michaela Cormack et al. Med J Aust 2024
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Monitoring Mental Health: Legal and Ethical Considerations of Using Artificial Intelligence in Psychiatric Wards.
Barry Solaiman et al. Am J Law Med 2024 49(2-3) 250-266
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Redefining informed consent form in cell and gene therapy trials.
Varsha Dalal et al. Perspect Clin Res 2024 15(1) 4-9
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Informed consent for whole genome sequencing in mainstream clinics: logistical constraints and possible solutions
A Chaouch et al, EJHG, January 4, 2024
Informed consent for artificial intelligence in emergency medicine: A practical guide.
Kenneth V Iserson et al. Am J Emerg Med 2023 76225-230
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Ethical considerations for genetic research in low-income countries: perceptions of informed consent, data sharing, and expectations in Nicaragua.
Iris S Delgado et al. Eur J Hum Genet 2023
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Looking ahead: ethical and social challenges of somatic gene therapy for sickle cell disease in Africa.
Nchangwi Syntia Munung et al. Gene Ther 2023
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Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?
Carolyn Riley Chapman et al. Am J Bioeth 2023 1-14
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Specific measures for data-intensive health research without consent: a systematic review of soft law instruments and academic literature.
Julie-Anne R Smit et al. Eur J Hum Genet 2023
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Public attitudes towards genomic data sharing: results from a provincial online survey in Canada.
Holly Etchegary et al. BMC Med Ethics 2023 24(1) 81
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Bioethics of somatic gene therapy: what do we know so far?
Paola Buedo et al. Curr Med Res Opin 2023 1-11
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The reuse of genetic information in research and informed consent.
David Lorenzo et al. Eur J Hum Genet 2023
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Ethical Aspects of Pediatric Genetic Care: Testing and Treatment.
Kelly E Ormond et al. Pediatr Clin North Am 2023 70(5) 1029-1046
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The reuse of genetic information in research and informed consent
D Lorenzo et al, EJHG, September 13, 2023
Ethical challenges in autism genomics: Recommendations for researchers.
Heini M Natri et al. Eur J Med Genet 2023 66(9) 104810
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No need for options for choice for unsolicited findings in informed consent for clinical genetic testing
EM Bunnik, EJHGH July 13, 2023
Patients' perspectives related to ethical issues and risks in precision medicine: a systematic review.
Lawko Ahmed et al. Front Med (Lausanne) 2023 101215663
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Defining critical educational components of informed consent for genetic testing: views of US-based genetic counselors and medical geneticists.
Miranda L G Hallquist et al. Eur J Hum Genet 2023
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Defining critical educational components of informed consent for genetic testing: views of US-based genetic counselors and medical geneticists
MLG Hallquist et al, EJHG, June 12, 2023
A Review of the Legislation of Direct-to-Consumer Genetic Testing in China.
Chen Yichao et al. Hum Gene Ther
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Ethical Considerations of Genome Sequencing for Pediatric Patients.
Michelle M Sergi et al. Seminars in pediatric neurology 2023 45101039
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Webinar report: stakeholder perspectives on informed consent for the use of genomic data by commercial entities.
Baergen Schultz et al. Journal of medical ethics 2023
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No person left behind: Mapping the health policy landscape for genomics research in the Caribbean.
Jyothsna Bolleddula et al. Lancet regional health. Americas 2023 15100367
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Priorities to promote participant engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network.
Anne L R Schuster et al. Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology 2023
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"Development and Implementation of Novel Chatbot-based Genomic Research Consent".
Erica D Smith et al. bioRxiv : the preprint server for biology 2023
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Artificial Intelligence in Reproductive Medicine - An Ethical Perspective.
Rolfes Vasilija et al. Geburtshilfe und Frauenheilkunde 2023 83(1) 106-115
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Malpractice litigation surrounding in vitro fertilization in the United States: a legal literature review.
Applebaum Jeremy et al. Fertility and sterility 2022
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Ethical Perspectives of Therapeutic Human Genome Editing From Multiple and Diverse Viewpoints: A Scoping Review.
Joseph Andrew M et al. Cureus 2022 14(11) e31927
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Page last reviewed:
Feb 1, 2024
Page last updated:
Apr 23, 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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