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Video
ELSIcon2022 Panel: Extending the Belmont Principles: Sovereignty and Solidarity in Genomic Research
ELSIcon2022 • Panel Session 2 • May 31, 2022 Vanessa Hiratsuka, Bobby Saunkeah, Joon-Ho Yu, Alize Ece Gunay, Krystal Tsosie The Belmont principles of respect for persons, beneficence, and…- Live
- Panel
- Community oversight of research
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Video
ELSIcon2022 Paper: Mandating Diversity in the Context of Inequity: Re-examining the Research-Care Divide in Precision Medicine Research
ELSIcon2022 • Paper • June 1, 2022 Nicole Foti, Emily Vasquez, Caitlin McMahon, Sandra Soo-Jin Lee, and Janet Shim on behalf of Ethics of Inclusion Study Team There is a diversity deficit in…- Live
- Paper
- Recruiting diverse participants to precision medicine research
- genomics research
- Biobanks
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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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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
Visual Storytelling in ELSI Research
The ELSI Friday Forum was held on Friday, April 14, 2023. “A picture is worth a thousand words” - this widely understood sentiment could play a vital role in ELSI research and communication about…- Visual storytelling
- Community Engagement
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Video
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
Integrating ELSI and Genomics: Past, Present and Future (Keynote)
In 1990, the first Program Announcement for the ELSI Program solicited research proposals across nine domains in the intersection between human genetics and society. The idea was to sponsor research… -
Video
Engaging Participants as Partners: ELSI Considerations in Large-Scale Precision Medicine Research
To be relevant and impactful, it has become increasingly necessary for researchers to engage stakeholders outside the usual research communities, such as patients and community representatives. Yet,… -
Video
ELSIcon2022 Panel: What Can Intersectionality Bring to ELSI?: Transforming Theory into Practice
ELSIcon2022 • Panel Session 8 • June 1, 2022 Daphne Martschenko, Lucas Matthews, Maya Sabatello, Krystal Tsosie In theory, the study of Ethical, Legal, and Social Implications (ELSI) of…- Live
- Panel
- Reflections on the ELSI field
- equity and justice in genetics
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Video
ELSIcon2022 Paper: The Genome and the Biome: Cystic Fibrosis @ Six Feet Apart
ELSIcon2022 • Paper • May 31, 2022 Rebecca Mueller Though cystic fibrosis is often referenced as a mendelian genetic disease, it also provides insights about the human microbiome and the…- Live
- Paper
- Population screening and public health genomics
- identity