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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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Biobanks[original query]>>Ethical, Legal and Social Issues (ELSI)[Category]
Ethical considerations for biobanking and use of genomics data in Africa: a narrative review.
Mary Amoakoh-Coleman et al. BMC Med Ethics 2023 24(1) 108
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Challenges in mapping European rare disease databases, relevant for ML-based screening technologies in terms of organizational, FAIR and legal principles: scoping review.
Ralitsa Raycheva et al. Front Public Health 2023 111214766
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A Literature Review on Ethics for AI in Biomedical Research and Biobanking.
Kargl Michaela et al. Yearbook of medical informatics 2022 31(1) 152-160
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Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research.
Staunton Ciara et al. Frontiers in genetics 2022 13719317
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Their DNA Hides a Warning, but They Don’t Want to Know What It Says
G Kolata, NY Times, January 21, 2022
Recommendations for Creating Codes of Conduct for Processing Personal Data in Biobanking Based on the GDPR art.40.
Krekora-Zajac Dorota et al. Frontiers in genetics 2021 12711614
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Governance of Access in Biobanking: The Case of Telethon Network of Genetic Biobanks.
Iacomussi Sofia et al. Biopreservation and biobanking 2021
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Consent for Use of Genetic Data among US Hispanics/Latinos: Results from the Hispanic Community Health Study/ Study of Latinos.
Gonzalez Sara et al. Ethnicity & disease 2021 31(4) 547-558
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Three decades of genetic privacy: A metaphoric journey.
Knoppers Bartha Maria et al. Human molecular genetics 2021
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Can Blockchain Solve the Dilemma in the Ethics of Genomic Biobanks?
Racine Valérie et al. Science and engineering ethics 2021 27(3) 35
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Ethical Challenges for Pediatric Biobanks.
Tarling Tamsin E et al. Biopreservation and biobanking 2021
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Preferences of biobank participants for receiving actionable genomic test results: results of a recontacting study.
Henrikson Nora B et al. Genetics in medicine : official journal of the American College of Medical Genetics 2021 Feb
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Identifying the nature and extent of public and donor concern about the commercialisation of biobanks for genomic research.
Critchley Christine R et al. European journal of human genetics : EJHG 2021 Jan
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ESHG warns against misuses of genetic tests and biobanks for discrimination purposes.
Forzano Francesca et al. European journal of human genetics : EJHG 2021 Jan
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Landscape of Pediatric Biobanking: Challenges and Current Efforts.
Wadhwa Lalita et al. Biopreservation and biobanking 2020 Dec
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Organoids for personalized treatment of Cystic Fibrosis: Professional perspectives on the ethics and governance of organoid biobanking.
Lensink Michael A et al. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society 2020 Dec
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Regulation of Biobanks in Italy.
Cannovo Nunzia et al. Frontiers in pediatrics 2020 8415
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Research participant understanding and engagement in an institutional, self-consent biobank model.
Schmanski Andrew et al. Journal of genetic counseling 2020 Sep
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Role of a regulatory and governance framework in human biological materials and data sharing in National Biobanks: Case studies from Biobank Integrating Platform, Taiwan and the National Biorepository, Uganda.
Nansumba Hellen et al. Wellcome open research 2019 4171
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The Skeleton in the Closet: Faults and Strengths of Public Versus Private Genetic Biobanks.
Tozzo Pamela et al. Biomolecules 2020 Sep 10(9)
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Public trust and global biobank networks.
Dive Lisa et al. BMC medical ethics 2020 Aug 21(1) 73
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Attitudes of blood donors to their sample and data donation for biobanking.
Raivola Vera et al. European journal of human genetics : EJHG 2019 27(11) 1659-1667
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The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks.
Staunton Ciara et al. European journal of human genetics : EJHG 2019 27(8) 1159-1167
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Accessing medical biobanks to solve crimes: ethical considerations.
de Groot Nina F et al. Journal of medical ethics 2020 Jun
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Deliberations About Genomic Research and Biobanks With Citizens of the Chickasaw Nation.
Reedy Justin et al. Frontiers in genetics 2020 11466
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At a Moment's Notice: Community Advisory Board Perspectives on Biobank Communication to Supplement Broad Consent.
Meagher Karen M et al. Public health genomics 2020 May 1-13
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Future-proofing biobanks’ governance
F Gille et al, Eur J Hum Genetics, May 18, 2020
Understanding Ethical, Legal and Societal Issues (ELSIs) in Human Biobanking and Genomics for Research and Healthcare in Zimbabwe: The Genomics Inheritance Law Ethics and Society (GILES) initiative.
Matimba Alice et al. AAS open research 2019 21
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Evolving public views on the value of one's DNA and expectations for genomic database governance: Results from a national survey.
Briscoe Forrest et al. PloS one 2020 15(3) e0229044
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Relationships of health information orientation and cancer history on preferences for consent and control over biospecimens in a biobank: A race-stratified analysis.
Hong Soo Jung et al. Journal of genetic counseling 2020 Jan
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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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