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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… -
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… -
Research Tool
The Public Understanding and Attitudes towards Genetics and Genomics (PUGGS) Questionnaire
Carver and colleagues developed the Public Understanding and Attitudes towards Genetics and Genomics (PUGGS) questionnaire to assess college students' knowledge of genetics, including gene-… -
Research Tool
How Does Genetic Ancestry Testing Affect Perceptions of Race? Conjoint Survey Instrument
The Conjoint Survey Instrument is a survey instrument developed for the study “How Does Genetic Ancestry Testing Affect Perceptions of Race?” The study explores how respondents make racial… -
Research Tool
Black-White Race Morphs Research Tool
The Black-White Race Morphs Research Tool is a resource comprised of 240 morphed images combining same-gender Black and White face images. The research tool uses original images from the Chicago Face… -
Grant Abstract
Demographic Patterns of Eugenic Sterilization in Five U.S. States: Mixed Methods Investigation of Reproductive Control of the 'Unfit'
PROJECT NARRATIVE Between 1907 and the mid-1970s, 32 US states passed and implemented eugenic sterilization laws that authorized the sterilization of people considered unfit. Our epidemiological,…