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ELSIcon2022 Paper: Systematic review of recommendations on the use of race, ethnicity and ancestry in the context of genetics research
ELSIcon2022 • Paper • May 27, 2022 Madelyn Mauro, Anna Lewis The appropriate use of population descriptors in genetics and beyond has been an often visited topic. Here we present the results of a…- Language and categorization
- Ethnicity
- Use of race and ancestry in research and the clinic
- Paper
- Pre-Recorded
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ELSIcon2022 Paper: Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa
ELSIcon2022 • Paper • May 27, 2022 Muyiwa Adigun, Babatunde R. Ojebuyi, Joshua Akinyemi, Kolawole Wahab, Albert Alpalu, Fred S. Sarfo, Lukman F. Owolabi, Rabiu Musbahu, Reginald Obiako, Mayowa…- Laws and research sites
- Biobanking and genomic databases
- Paper
- Pre-Recorded
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ELSIcon2022 Paper: Shining a light on overlooked questions in ELSI genomics
ELSIcon2022 • Paper • May 27, 2022 Ainsley Newson The rapid mainstreaming of clinical genomics and an ever-expanding global genomics research agenda have given rise to a large body of scholarship…- Reflections on the ELSI field
- Genetic testing and screening
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Flash: Self-Identified Spirituality and Interest in Genetic Testing for Hereditary Cancer Risk
ELSIcon2022 • Flash • May 27, 2022 Tesla Theoryn, Deborah J. Bowen, EJ Dusic, Kevin C. Cain, Brian Shirts, Elizabeth Swisher, Jeannine Brant Genetic testing for cancer risk can reduce the burden of…- Uptake of genetic testing
- Genetic testing and screening
- Flash
- Pre-Recorded
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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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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