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Video
ELSIcon2022 Flash: Revisiting the ethics of secondary findings in diagnostic genome-wide sequencing
ELSIcon2022 • Flash • May 27, 2022 Michael Mackley Secondary findings (SF) in genome-wide sequencing are variants unrelated to the indication for testing but associated with medically actionable…- return of results
- Genetic testing and screening
- Flash
- Pre-Recorded
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Video
ELSIcon2022 Paper: Resisting an old vice, or how polygenic risk information can do the most good
ELSIcon2022 • Paper • May 27, 2022 Jackson Ennis, Richard Sharp, Joel Pacyna Once upon a time, polygenic risk information was mostly a proprietary feature of direct-to-consumer genetic testing.…- polygenic risk
- Education and public reception of genetic science
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Paper: Reporting “Clinical Utility” in NICU Sequencing Studies: Systematic Review and Call for Rethinking
ELSIcon2022 • Paper • May 27, 2022 Rebecca Mueller, Chris Feudtner, Katharine Callahan Use of exome and genome sequencing are expanding in the neonatal intensive care unit with the goals of…- Language and categorization
- precision medicine
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Flash: Reconstruction of Normality Following the Diagnosis of Ehlers Danlos Syndromes
ELSIcon2022 • Flash • May 27, 2022 Hannah Mundinger, Kimberly Kaphingst, Allison Blumling Background: The Ehlers Danlos Syndromes (EDS) are a constellation of rare heritable connective tissue…- Lived experience of genetic conditions
- Patient-provider communication
- Flash
- Pre-Recorded
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Video
ELSIcon2022 Paper: Race-Based Genetic Testing: Learning from Black Americans to Inform Policy and Practice
ELSIcon2022 • Paper • May 27, 2022 James DuBois, Ana Iltis Geographical ancestry has been associated with increased risk of various genetic conditions. Race and ethnicity often have been used as…- Uptake of genetic testing
- Genetic testing and screening
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Panel: Privacy, Agency, and Relationships in the Genomic Era: Views from the Public
ELSIcon2022 • Panel • May 27, 2022 Ellen Clayton, Sarah Hagaman, Ayden Eilmus, Zhijun Yin This panel highlights the transdisciplinary approach our Center for Genetic Privacy and Identity in…- genetic identity
- Genetic testing and screening
- Panel
- Pre-Recorded
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Video
ELSIcon2022 Paper: Population Frequencies of Hereditary Cancer Gene Variants in Diverse Population Groups
ELSIcon2022 • Paper • May 27, 2022 Janis Geary, Kara Hapke, Robert Cook Deegan Genetic tests to estimate individual risk of various hereditary cancers have proliferated due to improved sequencing…- Data and data stewardship
- global health
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Flash: Participant understandings of biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa
ELSIcon2022 • Flash • May 27, 2022 Manono Luthuli, Nothando Ngwenya, Dumsani Gumede, Resign Gunda, Dickman Gareta, Olivier Koole, Mark J. Siedner, Emily B. Wong, Janet Seeley Background: Limited…- Motivation to participate in research
- equity and justice in genetics
- Flash
- Pre-Recorded
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Video
ELSIcon2022 Paper: Physician Perspectives on Polygenic Risk Scores
ELSIcon2022 • Paper • May 27, 2022 Stephanie M. Fullerton, David R. Crosslin, Gail P. Jarvik, Susan Trinidad Polygenic risk scores (PRS) use dozens to millions of genotypes, each usually…- Screening for polygenic conditions and risk scores
- Public Health
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Panel: Out of the tower and onto the ground: engaging communities and scientists in emergent research priorities
ELSIcon2022 • Panel • May 27, 2022 Sara Ackerman, Julia Brown, Keolu Fox, Sandra Soo-Jin Lee ELSI scholars work under varied institutional support structures that make it difficult to…- Recruiting diverse participants to precision medicine research
- genomics research
- biobank
- equity and justice in genetics
- Panel