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Publication
Engagement with health research summaries via digital communication to All of Us participants
Journal of the American Medical Informatics Association -
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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Publication
Stakeholder engagement: A key component of integrating genomic information into electronic health records
Genet MedClinical Sequencing Evidence-Generating Research (CSER) Consortium. Grant number(s): U01HG006382, U01HG006375, UO1HG006389-01, U01HG04599, U01HG006379, U01HG006380, UL1RR029887, U01HG006388, U01… -
Publication
Engaging children in genomics research: Decoding the meaning of assent in research
Genet Med -
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Grant Abstract
Genetic Privacy and Identity in Community Settings - GetPreCiSe
The incorporation of genetics and genomics into medical care and the public domain raises new challenges for how we understand privacy and identity, concepts that have long been closely linked in…- Address
- Advertising
- Affect
- Age
- All of Us Research Program
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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