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Introducing the Qualitative Data Sharing (QDS) Toolkit
We spoke with James M. DuBois, DSc, PhD, principal investigator of the QDS Project, about the new Qualitative Data Sharing (QDS) Toolkit. The QDS project team created the toolkit to support… -
Additional Resource
Implications of the New Genetics AKA: Ethical, legal, social implications (ELSI) of Genetics Syllabus
This course developed by Karen Schindler explores the ethical, lega, and social implications of emerging genetic technologies.- syllabus
- precision medicine
- Direct to Consumer Genetic Testing
- Henrietta Lacks
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Video
ELSIcon2022 Late-Breaking: Concordance with Pharmacogenomic Clinical Decision Support Recommendations is High Following Preemptive Pharmacogenomic Testing
ELSIcon2022 • Networking Session • Late-breaking Abstracts • June 2, 2022 Kurt D. Christensen, Catherine Hajek, Joel Van Heukelom, Madison Hickingbotham, Amanda Massmann, Emilie Zoltick,…- Live
- Networking Session
- Late-breaking Abstracts
- tools
- precision medicine
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Additional Resource
Polygenic Risk Methods in Diverse Populations (PRIMED) Consortium
The Polygenic Risk Methods in Diverse Populations (PRIMED) Consortium (comprised of NIH program staff, affiliate members, investigators at 7 study sites, and a Coordinating Center) is funded by the…- Polygenic risk scores
- precision medicine
- diversity
- Genetic Risk
- multi-site
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Video
Key stakeholders’ moral attitudes on somatic gene editing for inherited cardiomyopathy: a qualitative interview study
ELSIcon2024 • Paper • June 12, 2024 Authors: Jannieke Simons, MA (she/her/hers) - University Medical Center Utrecht (Netherlands) Introduction: This paper aims to unravel the…- ELSIcon2024
- 6th ELSI Congress
- Gene therapies and gene editing
- precision medicine
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Grant Abstract
Just Inclusion and Equity: Negotiating Community-Research Partnerships in Genomics Research (JUSTICE)
PROJECT NARRATIVE This study aims to investigate facilitators and barriers to long-term equitable partnerships in genomics research between communities and research institutions. We focus on legal…- community based participatory research
- trustworthiness
- stakeholder perspectives
- Beneficence
- Decision making
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Video
ELSIcon2022: Flash Session 1
ELSIcon2022 • Flash Session 1 • May 31, 2022 Includes discussion material from Julie Beans, Cheng Chen, Stella Murphy, Nina Vo, Breana Rinker, Bridget Easler, and Sheethal Jose.- Live
- Flash
- Race, disability, and gender studies
- precision medicine
- reproductive genetics
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Video
ELSIcon2024: Global Perspectives on Implementing Clinical Genomic Sequencing Equitably, Effectively and Efficiently
ELSIcon2024 • Panel • June 11, 2024 Authors: Corresponding Author: Deborah A. Marshall, PhD (she/her/hers) – The University of Calgary (Canada) Panelist: Kathryn Phillips, PhD (she…- ELSIcon2024
- 6th ELSI Congress
- Clinical genetic testing
- global health
- precision medicine
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Video
ELSIcon2024: Minoritized Community Recommendations for Ethical Conduct of Social Epigenomic Research
ELSIcon2024 • Paper • June 10, 2024 Authors: Speaker: Courtney Berrios, MSc, ScM, CGC (she/her/hers) – Children's Mercy Kansas City Social epigenomics research (SER) linking…- ELSIcon2024
- 6th ELSI Congress
- Community Engagement
- equity and justice in genetics
- precision medicine
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Video
ELSIcon2022 Paper: Seeking Diverse Inclusion in Bipolar Research: Lessons from a biobank
ELSIcon2022 • Paper • June 1, 2022 Karen Meagher, Monica Taylor-Desir How should biobanks recruit diverse cohorts from historically marginalized communities? Should they measure diversity via…- Live
- Paper
- Recruiting diverse participants to precision medicine research
- genomics research
- Biobanks