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ELSIcon2022 Paper: Precision medicine for whom? Upstream and downstream exclusion
ELSIcon2022 • Paper • May 31, 2022 Ilaria Galasso This paper scrutinizes the precision medicine (PM) approach in terms of benefits distribution: it examines the expected outputs of PM research…- Live
- Paper
- Recruiting diverse participants to precision medicine research
- genomics research
- Biobanks
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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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Part 1. Ethical, Legal and Social Implications (ELSI) on the Frontiers of Precision Medicine Research at National Scale: Experiences of the NIH All of Us Research Program
Katherine D. Blizinsky, PhD - National Institutes of Health ELSIconversations - April 16, 2021 The NIH All of Us Research Program (AoURP) aims to collect genomic, biological, environmental, and…- precision medicine research
- precision medicine
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Part 2. Ethical, Legal and Social Implications (ELSI) on the Frontiers of Precision Medicine Research at National Scale: Experiences of the NIH All of Us Research Program
Subhashini Chandrasekharan, PhD and Katherine D. Blizinsky, PhD - National Institutes of Health ELSIconversations - April 16, 2021 The NIH All of Us Research Program (AoURP) aims to collect genomic…- precision medicine
- precision medicine research
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Human Germline Genome Editing and the Identity Politics of Genetic Disability
Felicity Boardman, PhD - University of Warwick ELSIconversations - April 2, 2021 The intersection of human germline genome editing with identity politics has a range of implications for the…- human germline genome editing
- Personal Identity
- genetic disability
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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
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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: Interrogating the Value of Return: Stakeholders’ Perspectives on Return of Results in Biomedical Research
ELSIcon2022 • Paper • June 1, 2022 Caitlin McMahon, Nicole Foti, Mel Jeske, William Britton, Janet Shim, and Sandra Soo-Jin Lee on behalf of Ethics of Inclusion Study Team Over the last decade…- Live
- Paper
- Return of Results
- precision medicine
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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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ELSIcon2022 Paper: Dorothy, We’re Not in dbGaP Anymore: Emerging Cloud-Based Biomedical Data and Analysis Platforms and their Implications for Data Stewardship
ELSIcon2022 • Paper • June 3, 2022 Presented by: Sarah Nelson Jacklyn Dahlquist, Stephanie M. Fullerton Individual-level genomic, environmental, and linked health outcome data are being…- Live
- Paper
- Data and data stewardship
- precision medicine