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Grant Abstract
Exploring parental perspectives on pediatric genome testing, research, and data management in a multicultural population
Project Narrative Racial/ethnic disparities in genomic testing and research participation threaten to exacerbate inequities in health outcomes, particularly in pediatrics.3-7 Given that current…- Algorithms
- Adolescent
- African American
- Asian
- Consent
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Grant Abstract
Implementation of an impact assessment tool to optimize responsible stewardship of genomic data in the cloud
PROJECT NARRATIVE Cloud computing promises to scale up storage, analysis and sharing of health data needed to accelerate research in genomics and precision medicine but methods for evaluating how…- Data science
- bioethics
- Algorithms
- Delphi Study
- computerized tools
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Grant Abstract
Identifying strategies to reveal genetic results over the lifespan
PROJECT NARRATIVE If healthy babies are sequenced near birth, when should genetic information relevant to later stages of their lives be revealed? There are different possible strategies for when…- Decision making
- Specific qualifier value
- screening panel
- Genetic Diseases
- genetic screening
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Grant Abstract
Just Inclusion and Equity: Negotiating Community-Research Partnerships in Genomics Research (JUSTICE)
PROJECT NARRATIVE This study aims to investigate facilitators and barriers to long-term equitable partnerships in genomics research between communities and research institutions. We focus on legal…- community based participatory research
- trustworthiness
- stakeholder perspectives
- Beneficence
- Decision making
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Grant Abstract
Managing the Uncertainty of Genetic Information in Neonates
PROJECT NARRATIVE Genetic testing is increasingly used in ill neonates and holds promise to improve care, but the uncertainty of many genetic results complicates their application to clinical…- Decision making
- genetic association
- genetic counselor
- exome sequencing
- variant of unknown significance
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Grant Abstract
iDASH Genome Privacy and Security Competition Workshop
Project Narrative We will continue the effort to promote the development of novel yet practical solutions for important privacy and security challenges in human genomic research, via organizing…- data sharing
- genomic data
- computer science
- Biomedical informatics
- Security
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Video
ELSIconversations - The Misuse of Genomic Data, Session 2
Full title: What Can Geneticists Do to Address the Misuse of Genomic Data? Purdue University and CERA Collaboration Recent, but reemergent misuses of genetic data and research remain a critical…- Genomic Information
- genomic data
- genomic data privacy
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Video
ELSIconversations - The Misuse of Genomic Data, Session 1
Full title: What Can Geneticists Do to Prevent the Misuse of Genomic Data? Purdue University and CERA Collaboration Recent, but reemergent misuses of genetic data and research remain a critical…- Genomic Information
- genomic data
- genomic data privacy
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Video
NHGRI Informational Session on the Renewed ELSI Funding Opportunities
The National Human Genome Research Institute, in collaboration with several other NIH Institutes and Offices, recently renewed the three Notices of Funding Opportunity (NOFOs) used to support…- ELSI research
- Funding
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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