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Grant Abstract
Understanding All of Us Enrollees and Decliners Motivations to Enhance Recruitment and Retention
The proposed project is a qualitative study of recruitment and retention into the All of Us Research Program (AoURP) at a federally qualified health center (FQHC). A key component of the NIH's…- African American
- All of Us Research Program
- Anxiety
- barrier to care
- care systems
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News
Announcing a New Special Issue of the Journal of Literature and Science
We are pleased to announce the publication of a special issue of the Journal of Literature and Science, Fictions of Genetic Privacy, co-edited by Jay Clayton and Claire Sisco King. It features nine… -
Grant Abstract
Assessing the Use and Understanding of Certificates of Confidentiality
Researchers and institutions are ethically and legally obligated to safeguard research participants' privacy and the confidentiality of their data. Indeed, the success of the research enterprise…- Certificate of Confidentiality
- confidentiality
- Counseling
- court
- Data
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Video
ELSIcon2022 Paper: Cultivating just & equitable genomics research partnerships with community health centers
ELSIcon2022 • Paper • June 2, 2022 Johanna Crane, Carolyn Neuhaus Research partnerships with community health centers serving ethnically and economically diverse communities present an…- Live
- Paper
- health disparities
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Video
ELSIcon2022 Paper: Reproductive Concerns of Disabled Women: Whose Definitions of Disability are We Embracing?
ELSIcon2022 • Paper • June 3, 2022 Presented by: Dana Ernst • Co-Authors: Laren Clark, Sara Simonsen, Jacqueline Kent-Marvick, Elinor Ochs • Special thanks: James Tabery, Rebecca Anderson…- Live
- Paper
- Language and categorization
- reproductive genetics
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Video
The All of Us Responsible Conduct of Research Training: Fostering Ethical and Socially Responsible Research with Data from All of Us Participants
ELSIcon2022 • Pre-recorded Panel Sonya Jooma - All of Us Research Program, National Institutes of Health, Deputy Policy Director Katherine Blizinsky, PhD - All of Us Research Program, National…- precision medicine
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Collection
Realizing the Self-Determination Goals of Indigenous People in Genetics Research
Self-determination and tribal sovereignty are core concepts in the lives and histories of Indigenous Peoples. Within the United States, the peoples of the American Indian and Alaska Native tribes are…- Indigenous Peoples
- Genetics Research
- data sovereignty
- Indigenous Communities
- Community Engagement
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Publication
Genetics and politics: Trait foundations, technological advances, health, and privacy
Edward Elgar Publishing Limited -
Publication
An analysis of different concepts of “identity” in the heritable genome editing debate
Medicine, Health Care and Philosophy