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Public Health Genomics and Precision Health Knowledge Base (v7.7)
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Last data update: May 19, 2022
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all[original query]>>Ethical, Legal and Social Issues (ELSI)[Category]
Walking the tightrope between data sharing and data protection
Nature Medicine, May 18, 2022
Challenging the Utility of Polygenic Scores for Social Science: Environmental Confounding, Downward Causation, and Unknown Biology.
Burt Callie H et al. The Behavioral and brain sciences 2022 1-36
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Efficacy, safety and cost of gene therapy medicinal products in the U.S. and Europe.
Balkhi Bander et al. Drugs of today (Barcelona, Spain : 1998) 2022 58(5) 223-240
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Ethically robust reproductive genetic carrier screening needs to measure outcomes that matter to patients
L Dive et al, EJHG, May 18, 2022
Changes in opinions about human germline gene editing as a result of the Dutch DNA-dialogue project
D Houtman et al, EJHG, May 12, 2022
A Blockchain-Based Verifiable User Data Access Control Policy for Secured Cloud Data Storage.
Li Xinlong et al. Computational intelligence and neuroscience 2022 20222254411
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Caching and Reproducibility: Making Data Science Experiments Faster and FAIRer.
Schubotz Moritz et al. Frontiers in research metrics and analytics 2022 7861944
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Communal Coping as a Strategy to Enhance Family Engagement in Dilated Cardiomyopathy.
Burke Wylie et al. Circulation. Genomic and precision medicine 2022 101161CIRCGEN121003541
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The impact of FDA and EMA regulatory decision-making process on the access to CFTR modulators for the treatment of cystic fibrosis.
Costa Enrico et al. Orphanet journal of rare diseases 2022 17(1) 188
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A new ethical framework to determine acceptable risks in fetal therapy trials.
Hendriks Saskia et al. Prenatal diagnosis 2022
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Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis.
Spector-Bagdady Kayte et al. JMIR cancer 2022 8(2) e35033
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Genome Privacy and Trust.
Gürsoy Gamze et al. Annual review of biomedical data science 2022
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Multinational landscape of health app policy: toward regulatory consensus on digital health
JA Diao et al, NPJ Digital Medicine, May 11, 2022
An ethical plan for including forcibly displaced persons in omics and digital technology research
F Taki et al, Nature Medicine,May 5, 2022
China expands control over genetic data used in scientific research Guidelines released this year are the latest regulations to protect China’s genetic resources, but some scientists say they are making collaborations harder.
S Mallapaty, Nature, May 6, 2022
Risks and benefits of dermatological machine learning healthcare applications - an overview and ethical analysis.
Willem Theresa et al. Journal of the European Academy of Dermatology and Venereology : JEADV 2022
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Ethical Considerations in Research with Genomic Data.
Horton Rachel et al. The New bioethics : a multidisciplinary journal of biotechnology and the body 2022 1-15
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Perspectives on choice of law challenges in multistate precision medicine research.
Beskow Laura M et al. Journal of law and the biosciences 2022 9(1) lsac010
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To make AI fair, here’s what we must learn to do
M Sloane, Nature, May 4, 2022
The Need for a Global Approach to the Ethical Evaluation of Healthcare Machine Learning.
Vandemeulebroucke Tijs et al. The American journal of bioethics : AJOB 2022 22(5) 33-35
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Getting genetic ancestry right for science and society.
Lewis Anna C F et al. Science (New York, N.Y.) 2022 376(6590) 250-252
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The risk of coding racism into pediatric sepsis care: the necessity of anti-racism in machine learning.
Sveen William Norman et al. The Journal of pediatrics 2022
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Investigating for bias in healthcare algorithms: a sex-stratified analysis of supervised machine learning models in liver disease prediction.
Straw Isabel et al. BMJ health & care informatics 2022 29(1)
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Returning individual research results in international direct-to-participant genomic research: results from a 31-country study
M Lang et al, EJHG, April 28, 2022
Considerations of Autonomy in Guiding Decisions around the Feedback of Individual Genetic Research Results from Genomics Research: Expectations of and Preferences from Researchers in Botswana.
Kasule Mary et al. Global health, epidemiology and genomics 2022 20223245206
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Diversity, Profit, Control: An Empirical Study of Industry Employees' Views on Ethics in Private Sector Genomics.
Walker Alexis et al. AJOB empirical bioethics 2022 1-13
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Walking a Fine Germline: Synthesizing Public Opinion and Legal Precedent to Develop Policy Recommendations for Heritable Gene-Editing.
Benston Shawna et al. Journal of bioethical inquiry 2022
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The medical and societal impact of big data analytics and artificial intelligence applications in combating pandemics: A review focused on Covid-19.
Galetsi Panagiota et al. Social science & medicine (1982) 2022 301114973
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Machine learning and health need better values
M Ghassemi et al, NPJ Digital Medicine, April 22, 2022
Ethical issues of collecting, storing, and analyzing geo-referenced tweets for mental health research.
Fadda Marta et al. Digital health 2022 820552076221092539
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Page last updated:
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