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Grant Abstract
Prescriptive Decision Modeling for Cystic Fibrosis Screening
Dr. Asch will be conducting a prescriptive decision analysis for CF screening programs, which will use decision theory and economic techniques to model decision-making about CF carrier testing. The…- Cystic Fibrosis
- Decision Making
- gene mutation
- Genetic Counseling
- health care cost /financing
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SNAPSHOT
Genome Editing & Organ Transplants
There is an extreme shortage of organs for people who need donations and scientists are challenged with finding a solution. Using pigs, genome editing may help us create more organs suitable for…- Gene Editing
- Organ transplants
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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
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Research Tool
Codebook: ENLITE - Evaluating the Benefits and Limitations of Next Generation DTC
Kilbride and colleagues explored public perceptions and knowledge of direct-to-consumer genetic testing. The REDCap codebook for this study outlines each data element of the survey, including the… -
News
ELSI in Review • November 2022
About this listing ELSI in Review is a listing of recently published reviews of the literature on key ELSI topics curated by CERA staff. Our November 2022 set explores ethical considerations in… -
Video
The Challenges of Standardization in a System with Complex Incentives
Gillian Hooker, PhD, ScM, CGC Date: April 29, 2022 Question: How is information about patient race, ethnicity, and ancestry on clinical laboratory requisition forms used in your work? In…- Standardization
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Research Tool
Scenarios for Ethical and Legal Analysis of Genomic Data Sharing Practices
McWhirter and colleagues report the development and validation of 6 scenarios based on actual genomic data sharing pratices in Australia. These scenarios could be used to inform the decision-making… -
Publication
Eugenics
Salem PressDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Publication
Eugenics
Nature Pub. GroupDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Research Tool
CSER Phase 2 Follow Through on Medical Actions Attributable to Genomic Testing (MRA) Survey
The Follow Through on Medical Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, measures whether parents of…