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Video
ELSIcon2024: Nothing About Us Without Us: Sharing Relevant Results with Communities that Provide Genomic Data
ELSIcon2024 • Paper • June 11, 2024 Authors: Speaker: Sarah LeBaron von Baeyer, PhD (she/her/hers) – Variant Bio Amidst the din of debate in ethical conduct of genomic research…- ELSIcon2024
- 6th ELSI Congress
- Community Engagement
- equity and justice in genetics
- Return of results and incidental findings
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Publication
Moral engagement and disengagement in health care AI development
AJOB Empirical Bioethics -
Grant Abstract
Genetic Privacy and Identity in Community Settings - GetPreCiSe
Concerns about privacy and personal identity impede use of data about genomic variation, phenotypes, demographics, and exposures from large numbers of people to uncover the contributions of such…- Attitude
- Automobile Driving
- base
- Belief
- Benefits and Risks
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Video
March 2025 EFF: Enhancing Genetic Screening Access through Community Partnerships in the Cleveland African American Prostate Cancer Project
Genetic screening is crucial for identifying genetic risk factors for disease, but marginalized groups often have low participation due to lack of access, awareness, and mistrust of healthcare…- community building
- Prostate Cancer
- Community resource projects
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Publication
Community involvement in developing policies for genetic testing: Assessing the interests and experiences of individuals affected by genetic conditions
American Journal of Public Health -
Video
Visual Storytelling in ELSI Research
The ELSI Friday Forum was held on Friday, April 14, 2023. “A picture is worth a thousand words” - this widely understood sentiment could play a vital role in ELSI research and communication about…- Visual storytelling
- Community Engagement
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Publication
Engagement of patients and the public in personalised prevention in Europe using genomic information: A scoping review
Frontiers in Public Health -