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Video
ELSIcon2022 Paper: Cystic Fibrosis Communities: Shifting Sites of Prognostic Imagination
ELSIcon2022 • Paper • May 27, 2022 Rebecca Mueller Long before COVID-19 made social distancing normal, people with cystic fibrosis already practiced such behaviors. Between the 1980s and the…- Lived experience of genetic conditions
- Race, disability, and gender studies
- Paper
- Pre-Recorded
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ELSIcon2022 Paper: The Sangre Por Salud Community Advisory Board: Enhancing Genomic Medicine Research within a Latino-serving Federally Qualified Health Center.
ELSIcon2022 • Paper • June 2, 2022 Valentina Hernandez, Davinder Singh, Iftikhar Kullo, Elena De Filippis, Karen Meagher, Sara Watson, Richard Sharp, Gabriel Shaibi, Crystal Gonzalez…- Live
- Paper
- Community oversight of research
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Video
ELSIcon2022 Flash: Communicating precision medicine research: multidisciplinary teams and diverse communities
ELSIcon2022 • Flash • May 31, 2022 Julie Beans Introduction: Precision medicine research investigates the differences in individuals’ genetics, environment, and lifestyle to tailor health…- Live
- Flash
- tools
- precision medicine
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ELSIcon2022 Paper: Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria
ELSIcon2022 • Paper • June 3, 2022 Arti Singh, Michelle Nichols, Oyedunni Arulogun, Olorunyomi Olorunsogbon, Ezinne Uvere, Mayowa Ogunronbi, Joshua Akinyemi, Carolyn Jenkins, Kolawole Wahab,…- Live
- Paper
- Attitudes about sharing biological samples and health data
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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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Video
ELSIcon2022 Paper: The Ethical, Legal, and Social Implications of Stroke Genomic and Biobanking Research in Sub-Saharan Africa: Community Member Perspectives and Factors for Consideration
ELSIcon2022 • Paper • June 2, 2022 Michelle Nichols, Arti Singh, Olorunyomi Olorunsogbon, Ezinne Uvere, Mayowa Ogunronbi, Sylvia Melikam, Joshua Akinyemi, Kolawole Wahab, Albert Alpalu, Fred S…- Live
- Paper
- Attitudes about sharing biological samples and health data
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Video
Genomic Data Sharing: Putting Principles and Policy into Practice
ELSI Friday Forum • October 8, 2021 Genomic data governance principles were largely developed for data collection and use in research contexts. Boundaries between genome research and clinical…- Data Governance
- data sovereignty
- genomic data sharing policy
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ELSIcon2022 Flash: Patients’ expectations of benefits from large-panel genomic tumor testing in rural community oncology practices
ELSIcon2022 • Flash • June 3, 2022 Eric Anderson, Paul Han Large-panel genomic tumor testing (GTT) is a new technology that promises to make cancer treatment more precise. However, GTT also…- Live
- Flash
- Uptake of genetic testing
- Genetic testing and screening
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Video
Constructing Strategies to Address and Assess Equity, Outreach, and Impact
The second session highlights strategies and solutions to some of the issues raised in Session 1. There is a specific focus on community engaged research and implementation strategies that target…- community based research
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ELSIcon2022 Paper: “Big bioethics” research: Is the ELSI community ready?
ELSIcon2022 • Paper • May 31, 2022 Joel Pacyna, Richard Sharp ELSI research has traditionally sought to give patients greater voice—especially patients at the margins of healthcare who may be…- Live
- Paper
- Reflections on the ELSI field
- Genetic testing and screening