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ELSIcon2022 Paper: Examining Embeddedness: A Call for Principles and Best Practices for Integrating ELSI
ELSIcon2022 • Paper • May 27, 2022 Jenny Reardon, Stephanie M. Fullerton, and Sandra Soo-Jin Lee Increasingly, public and private funders have come to recognize the critical significance of…- Reflections on the ELSI field
- equity and justice in genetics
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Paper: Cystic Fibrosis Communities: Shifting Sites of Prognostic Imagination
ELSIcon2022 • Paper • May 27, 2022 Rebecca Mueller Long before COVID-19 made social distancing normal, people with cystic fibrosis already practiced such behaviors. Between the 1980s and the…- Lived experience of genetic conditions
- Race, disability, and gender studies
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Flash: Conceptualization and Measurement of Genetic Literacy
ELSIcon2022 • Flash • May 27, 2022 Brianne Daly, Kimberly Kaphingst Genetic literacy, a construct often thought of as genetics-related knowledge and skills, is critical to individuals being able to…- Language and categorization
- Methodology and study design
- Flash
- Pre-Recorded
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ELSIcon2022 Paper: Community Perspectives on Electronic Consent Education for the Retention of Newborn Screening Bloodspots
ELSIcon2022 • Paper • May 27, 2022 Erin Rothwell, Caren Frost, Bob Wong, Erin Johnson Promoting informed decision making for research while concurrently advancing equity and justice for underserved…- Attitudes about sharing biological samples and health data
- Biobanking and genomic databases
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Paper: Awareness and Utilization of Genetic Testing among Hispanic/Latino Adults Living in the US: The Hispanic Community Health Study/Study of Latinos
ELSIcon2022 • Paper • May 27, 2022 Kurt D. Christensen, Mengran Zhang, Lauren Galbraith, Einat Granot-Hershkovitz, Sarah Nelson, Sara Gonzalez, Maria Argos, Krista Perreira, Martha Daviglus, Carmen…- Uptake of genetic testing
- Health Disparities
- Paper
- Pre-Recorded
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ELSIcon2022 Flash: An Exploration of Family Connection and African Ethnic Identity Development Among African Americans Finding African Genetic Relatives While Using Consumer Genetic Genealogy Services
ELSIcon2022 • Flash • May 27, 2022 LaKisha David African Americans generally lack awareness of their ancestral family history due to the forced displacement of their ancestors during the…- Relative finding/matching
- identity
- Flash
- Pre-Recorded
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ELSIcon2022 Paper: A Survey on Public Perception toward the Korean National Bio Big Data Project
ELSIcon2022 • Paper • May 27, 2022 Ilhak Lee, Hyun-Young Park, Chai Hee Youl, Jeong Eun Kim, Hannah Kim, Jihyun Yang This survey is aimed at identifying the perception of the general public and…- Motivation to participate in research
- law
- Regulation
- Governance
- Paper
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Video
Exploring Difference in the Biology Classroom: How to represent wide-ranging family structures and personal identities using the latest pedigree nomenclature
Co-Moderators: Marnie Gelbart, PhD (pgEd) & Robin Bowman, MEd (pgEd) Presenters: Ina Amarillo, PhD & Robin Bennett, MS, LGC, ScD Hon Pedigrees are a widely used tool in medicine,…- Pedigree
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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