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Video
ELSIconversations ELSICon2022: Stakeholder Perspectives on Data Sharing and Privacy
Co-Moderators: Vasiliki N. Rahimzadeh, PhD; Sara Ackerman, PhD, MPH; & Sandra Soo-Jin Lee, PhD Presenters: Karen Meagher, PhD, Alyx Vogle, MS CGC, & LaKisha David,… -
In the Media
Gene Treatment for Rare Epilepsy Causes Brain Side Effect in 2 Children
The New York Times |Erika Check Hayden- prenatal gene editing
- epilepsy gene treatment
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In the Media
The Disease Took Zara, Then Sara. Could Ayla Be Saved?
The New York Times |Gina Kolata- rare genetic disease
- pre-natal genetic treatment
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Video
Genetics and AI: Group Privacy and Fairness
Big data and artificial intelligence are growing more pervasive and are creating new, complex links between individuals and the many groups to which they might belong, including groups no one might…- Big Data
- AI
- genomic privacy
- Algorithms
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Funding Opportunity
Diversity Centers for Genome Research (U54 Clinical Trials Optional)
- diversity
- Genome research
- Minority Serving Institution (MSI)
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Funding Opportunity
Diversity Centers for Genome Research (UG3/UH3 Clinical Trials Optional)
- diversity
- genomic research
- Minority Serving Institution (MSI)
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Video
ELSIcon2022 Panel: Will it be easier to cure sickle cell disease through gene therapy than prevent the disease through pre-implantation genetic testing for the selection of unaffected embryos?
ELSIcon2022 • Panel • May 27, 2022 Joshua Combs, Sigal Klipstein, Jeanne O'Brien, Erin Rothwell Sickle cell disease (SCD) is an inherited hemoglobinopathy that results in a pattern of early…- Pre-Recorded
- Panel
- Access to genetic screening and therapies
- Gene therapy and gene editing
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Video
ELSIcon2022 Paper: White racial framing and comfort with medical research: a critical analysis
ELSIcon2022 • Paper • May 27, 2022 Melissa Creary, Jodyn Platt, Sharon Kardia, Paige Nong Objectives: To analyze racial differences in comfort with medical research using an alternative to…- Pre-Recorded
- Paper
- Motivation to participate in research
- Public Health
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Video
ELSIcon2022 Panel: The All of Us Responsible Conduct of Research Training: Fostering Ethical and Socially Responsible Research with Data from All of Us Participants
ELSIcon2022 • Panel • May 27, 2022 Katherine Blinzinsky, Subhashini Chandrasekharan, Sonya Jooma The All of Us Research Program is an ambitious effort to enroll one million or more…- Pre-Recorded
- Panel
- Data and data stewardship
- precision medicine
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Video
ELSIcon2022 Paper: Investigating an Ethos of Duty in Precision Medicine Research Calls for Minority Participation
ELSIcon2022 • Paper • May 27, 2022 Rachel Bailey A rhetorical utility of identity may provide a novel method of inquiry for bioethics research. To increase diversity of Precision Medicine (PM…- Pre-Recorded
- Paper
- Motivation to participate in research
- Education and public reception of genetic science