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Video
ELSIcon2022 Plenary: Troubled Dreams: Genetics, Race, and the Search for Justice in Sickle Cell Disease
ELSIcon2022 • Plenary Session • June 2, 2022 Welcome and Introduction by Sandra Soo-Jin Lee, PhD. Plenary: "Gene Editing and Gene Therapy: The Case of Sickle Cell " presented by Keith Wailoo,…- Live
- Plenary Session
- Stigma and discrimination
- Gene Editing
- Sickle Cell
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Video
ELSIcon2022 Paper: "Extremely slow and capricious:" Genetic Researcher Experiences Using Shared Data Resources
ELSIcon2022 • Paper • June 3, 2022 J. Scott Roberts, Kayte Spector-Bagdady The National Institutes of Health (NIH) is investing vast resources into building accessible and demographically…- Live
- Paper
- Data and data stewardship
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Video
ELSIcon2022 Paper: Family Secrets Revealed: Experiences and impacts of participating in direct-to-consumer genetic relative-finder services
ELSIcon2022 • Paper • May 27, 2022 Christi Guerrini, Jill Robinson, Cinnamon Bloss, Whitney Bash Brooks, Stephanie M. Fullerton, Brianne Kirkpatrick, Sandra Soo-Jin Lee, Mary Majumder, Stacey…- Relative finding/matching
- Genetic testing and screening
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Paper: Using cost-utility analysis to evaluate the health equity impacts of population genetic screening for BRCA1/BRCA2
ELSIcon2022 • Paper • May 31, 2022 Kate Saylor Predictive genetic screening in unaffected individuals is becoming more accessible, but its relevance for advancing health equity is debated. Many…- Live
- Paper
- Population screening and public health genomics
- Genetic testing and screening
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Video
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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Video
Democratic approaches to precision medicine and genetics research: comparing inclusiveness and effectiveness of PPI practices to the pursuit of the public good
Ilaria Galasso, PhD - University College Dublin ELSIconversations - March 5, 2021 In this paper we scrutinize emerging public involvement practices as a response to the major ELSI challenges around…- precision medicine research
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Video
ELSIcon2022 Flash: Genetic testing for addiction: A qualitative examination of interest, motivations, and concerns among patients with gambling disorder and alcohol use disorder.
ELSIcon2022 • Flash • June 3, 2022 Shawn Sorge, Matthew Lebowitz Rationale: Addictive disorders are increasingly conceptualized as having a genetic basis. Personalized genetic information is…- Live
- Flash
- Uptake of genetic testing
- Genetic testing and screening
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Video
ELSIcon2022 Panel: Privacy and utility of genetic testing among families with hereditary cancers living in three countries: The International Cascade Screening experience
ELSIcon2022 • Panel 5 • May 31, 2022 Silvia Barnoy, Efrat Dagan, Sue Kim, Maria Caiata-Zufferey, Maria Katapodi Hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS) are monogenic…- Live
- Panel
- Disclosure of genetic risk information to relatives
- equity and justice in genetics
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Video
ELSIcon2022 Paper: The need to consider a priori motivations and deterrents: A systematic review of elements influencing the consent process for genetic tests from the perspective of patients.
ELSIcon2022 • Paper • May 27, 2022 Frederic Coulombe, Anne-Marie Laberge Background: Consent for genetic tests is a well-established practice. Nevertheless, there is no consensus on what specific…- Uptake of genetic testing
- Genetic testing and screening
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Paper: Informational Disparities in Electronic Health Records: Implications for Delivery of Hereditary Cancer Genetic Services
ELSIcon2022 • Paper • May 27, 2022 Daniel Chavez-Yenter, Xiangying Chu, Yuyu Chen, Melody S. Goodman, Kimberly Kaphingst Health system-wide approaches are needed to identify patients eligible for…- Data and data stewardship
- Public Health
- Paper
- Pre-Recorded