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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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Grant Abstract
Managing the Uncertainty of Genetic Information in Neonates
PROJECT NARRATIVE Genetic testing is increasingly used in ill neonates and holds promise to improve care, but the uncertainty of many genetic results complicates their application to clinical…- Decision making
- genetic association
- genetic counselor
- exome sequencing
- variant of unknown significance
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Grant Abstract
iDASH Genome Privacy and Security Competition Workshop
Project Narrative We will continue the effort to promote the development of novel yet practical solutions for important privacy and security challenges in human genomic research, via organizing…- data sharing
- genomic data
- computer science
- Biomedical informatics
- Security
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Research Tool
The Parental Personal Utility Scale (Parent PrU)
The Personal Utility Scale (PrU) asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful). This… -
Research Tool
Race Attributes in Clinical Evaluation (RACE) Scale
Bonham and colleagues developed the Racial Attributes in Clinical Evaluation (RACE) scale to assess the degree to which health professionals employ race in their clinical decision making. The scale… -
Funding Opportunity
Ethical, Legal and Social Implications (ELSI) Small Research Grant (R03 Clinical Trial Optional)
- ELSI
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Funding Opportunity
Ethical, Legal and Social Implications (ELSI) Research (R01 Clinical Trial Optional)
- ELSI
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Research Tool
Inteview Guide: Knowledge and Attitudes about Privacy and Secondary Data Use among African-Americans Using Direct-to-Consumer Genetic Testing
Ziegler and colleagues developed this semi-structured, qualitative, interview guide to elicit perspectives from Black/African-American participants on direct-to-consumer genetic testing. Topics… -
Research Tool
Interview Guide: Diverse Parental Perspectives of the Social and Educational Needs for Expanding Newborn Screening through Genomic Sequencing
Timmins and colleagues created this semi-structured interview guide to explore parents' perspectives on expanded newborn screening through genomic sequencing. Questions explore parent's…