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Video
Polygenic Risk Prediction in Diverse Populations and Contexts: Scientific and Ethical Considerations
This ELSI Friday Forum took place on January 12, 2024. The differential performance of polygenic risk scores (PRS) by population genetic background is a well-known scientific concern and one…- Polygenic risk scores
- Bioethics
- ethical considerations
- genetic diversity
- Screening for polygenic conditions and risk scores
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News
EFF Resources - Building Infrastructures to Enhance Community Engagement Work
Session Title: Building Infrastructures to Enhance Community Engagement Work Date and time: Friday, February 14, 2025 | 12pm ET US / 9am PT US Moderator: Heini Natri, PhD Presenters: Ishita Das… -
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Grant Abstract
Integrating Ethics into Machine Learning for Precision Medicine
The application of new computerized methods of data analysis to vast collections of medical, biological, and other data is emerging as a central feature of a broad vision of precision medicine (PM)…- Algorithms
- Artificial intelligence
- Awareness
- base
- Big Data
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Publication
A community effort to protect genomic data sharing, collaboration and outsourcing
Genomic MedicineThe Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe). Grant number(s): RM1HG009030 -
Publication
Mismatched and misaligned: Responsibility narratives in American research labs for synthetic biotechnologies
Journal of Responsible Innovation -
Research Tool
Data Dictionary: Assessment of the Reading of the Informed Consent Play
Rothwell and colleagues assessed the short-term impact of the play "Informed Consent" by Deborah Zoe Laufer (a fictionalized look at the controversy over specimens collected from the… -
Video
Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions
This ELSI Friday Forum took place on September 8, 2023. Since application of the first individualized therapy in 2019, development of these bespoke treatments has expanded rapidly. Individualized…- Ultrarare Diseases
- N-of-1
- Individualized Therapies
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Video
ELSIcon2022 Flash: Health professionals’ perspectives on the ethics of using COVID-19 host genomic information for clinical and public health decision-making during the pandemic
ELSIcon2022 • Flash • May 31, 2022 Sheethal Jose, Gail Geller, Juli Bollinger, Jeffrey Kahn, Brian Garibaldi Advances in host genomics research can play an important role in enabling…- Live
- Flash
- Population screening and public health genomics
- Genetic testing and screening
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Video
CRISPR and Human Identity: Governing Germline Gene Editing
International uproar followed the announcement in late 2018 of the birth of twin girls whose genomes had been edited with CRISPR genome editing technology. Critics pointed not only to the health…- CRISPR
- Personal Identity
- Gene Editing
- Governance of emerging genomic technologies