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Public Health Genomics and Precision Health Knowledge Base (v9.0)
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Last data update: Apr 21, 2024
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Records 1 - 25 (of 25 Records)
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Blood Diseases[original query]>>Ethical, Legal and Social Issues (ELSI)[Category]
An Ethical and Financial Obligation for Sickle Cell Disease Gene Therapy in the United States.
Austin Wesevich et al. Ann Intern Med 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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CRISPR in Public Health: The Health Equity Implications and Role of Community in Gene-Editing Research and Applications.
Andrew M Subica et al. Am J Public Health 2023 e1-e9
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The ethics of gene therapy for hemophilia: a narrative review.
Lieke Baas et al. Journal of thrombosis and haemostasis : JTH 2023
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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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Is the world ready for gene therapy?
Garrison Louis P et al. Haemophilia : the official journal of the World Federation of Hemophilia 2022 28 Suppl 25-8
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Professionally responsible management of the ethical and social challenges of antenatal screening and diagnosis of β-thalassemia in a high-risk population.
Corda Valentina et al. Journal of perinatal medicine 2021
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Feasibility and acceptability of early infant screening for sickle cell disease in Lagos, Nigeria-A pilot study.
Oluwole Esther O et al. PloS one 2020 15(12) e0242861
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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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When Actions Speak Louder Than Words - Racism and Sickle Cell Disease.
Power-Hays Alexandra et al. The New England journal of medicine 2020 Sep
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NIH Director Backs Moratorium for Heritable Genome Editing
Gen News, November 8, 2019
Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations.
Munung Nchangwi Syntia et al. Frontiers in genetics 2019 10943
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To Join Or Not To Join? A Case Of Sickle Cell Clubs, Stigma And Discrimination In Secondary Schools In Butambala District, Uganda.
Tusuubira Sharifu K et al. Adolescent health, medicine and therapeutics 2019 10145-152
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The Anticipatory Politics of Improving Childhood Survival for Sickle Cell Disease.
Jae Gina et al. Science, technology & human values 2018 Nov 43(6) 1122-1141
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Is Genetic Medicine Making the World Less Fair?
L Hercher, the Nation, August 23, 2019
Putting diversity front and center
P Ganguly, NHGRI, June 19, 2019
A justice-based argument for including sickle cell disease in CRISPR/Cas9 clinical research.
Baffoe-Bonnie Marilyn S et al. Bioethics 2019 May
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A CRISPR focus on attitudes and beliefs toward somatic genome editing from stakeholders within the sickle cell disease community.
Persaud Anitra et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Dec
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Effort to Diversify Medical Research Raises Thorny Questions of Race
M Miller, Scientific American, August 10, 2018
FDA Issues Set of Gene Therapy Draft Guidances
Global Genes, July 11, 2018
When you have a serious hereditary disease, who has a right to know
S Raviv, Mosaic, Wellcome, July 11, 2018
Are Payers Ready To Address The Financial Challenges Associated With Gene Therapy?
Health Affairs Blog, June 28, 2018
FDA plans to speed path to approval for some gene therapies, starting with hemophilia
I. Swetlitz, StatNews, May 22, 2018
Inherited blood disorders, genetic risk and global public health: framing 'birth defects' as preventable in India.
Chattoo Sangeeta et al. Anthropology & medicine 2018 Apr 25(1) 30-49
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Recent patents and technology transfer for molecular diagnosis of β-thalassemia and other hemoglobinopathies.
Breveglieri Giulia et al. Expert opinion on therapeutic patents 2015 Sep 1-24
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Page last reviewed:
Feb 1, 2024
Page last updated:
Apr 21, 2024
Content source:
Public Health Genomics Branch in the Division of Blood Disorders and Public Health Genomics
,
National Center on Birth Defects and Developmental Disabilities
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