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ELSIcon2022 Paper: The Goldilocks Conundrum: Disclosing Discrimination Risks in Informed Consent
ELSIcon2022 • Paper • June 2, 2022 Wendy Uhlmann, Sonia Suter, Aaron Scherer, Anya Prince Studies have shown that fear of genetic discrimination lowers participation in genomic research and…- Live
- Paper
- Stigma and discrimination
- Genetic testing and screening
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Video
ELSIcon2022 Paper: Democratizing Knowledge for Sickle Cell Disease Gene Therapy: A Deliberative Stakeholder Engagement Approach
ELSIcon2022 • Paper • June 3, 2022 Kiana Amini, Vence Bonham The advent of genetic therapy technologies implicates both tremendous therapeutic promise and potential risk. Sickle cell disease…- Live
- Paper
- Gene therapy and gene editing
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ELSIcon2022 Paper: Exploring Disparities and Equity Across the Newborn Screening System
ELSIcon2022 • Paper • June 1, 2022 Aaron Goldenberg, Beth Tarini, Natasha Bonhomme, Amy Gaviglio As with much of society, public health and medicine have been called to examine and act on…- Live
- Paper
- Population screening and public health genomics
- Genetic testing and screening
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ELSIcon2022 Paper: Disrupting the status quo: a new model for benefit sharing in genomics research, a case study from South Africa
ELSIcon2022 • Paper • June 2, 2022 Erin Burke, Michèle Ramsay, June Fabian Genetics researchers have earned the label “extractive biocolonialists” because they collect samples and fail to…- Live
- Paper
- Recruiting diverse participants to precision medicine research
- genomics research
- Biobanks
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ELSIconversations: Shedding Light on the Use of Population Descriptors in Clinical Genetics
SESSION 1 - April 29: Shedding Light on the Use of Population Descriptors in Clinical Genetics Question: How is information about patient race, ethnicity, and ancestry on clinical…- population descriptors
- clinical genetics
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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
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- Pre-Recorded
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ELSIcon2022 Paper: Sociodemographic diversity in clinical genomics research
ELSIcon2022 • Paper • May 31, 2022 Meghan Halley, Holly Tabor, Jennifer Young Background: Barriers to clinical genomics research participation are particularly critical for medically…- Live
- Paper
- Motivation to participate in research
- Patient-provider communication
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ELSIcon2022 Paper: The 'Lived Experience' of Pediatric Gene Therapy - A Scoping Review
ELSIcon2022 • Paper • May 27, 2022 Laura Kimberly, Cara Hunt, Ryan Dieudonne, Alix Hall, Pat Furlong, Andrew McFadyen, Alison Bateman-House, Jennifer DeSante-Bertkau Little is known about patients…- Motivation to participate in research
- Gene therapy and gene editing
- Paper
- Pre-Recorded
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ELSIcon2022 Paper: Genetic Options and Constraints: How Genetic Ancestry Tests Change Ethnic Identities
ELSIcon2022 • Paper • May 27, 2022 Şule Yaylacı, Wendy Roth An estimated 15% of all U.S. adults have taken genetic ancestry tests (GATs). Recent studies have found that many test-takers change…- genetic identity
- Paper
- Pre-Recorded
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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