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Research Tool
CSER Information Seeking Measure
The CSER Information Seeking Measure (two versions) is a single-item measure that assesses the sources of information that patients think they will be likely to use to obtain further information… -
Research Tool
CSER Phase 2 - Feelings about Genomic Testing Results (FACToR) – Parent
This post-return of child genetic test results survey for parents assesses the psychosocial impact of receiving genomic findings by measuring how much participants had specific feelings such as… -
Research Tool
(4) Narrated Slideshow Videos: Introduction to Gene Drive Technologies for Lay Audiences
Schairer and colleagues created 4 Narrated Slideshow Videos that provide an introduction to gene drive technologies for lay audiences. Each narrated video is between 5-6 minutes. Slide Show 1, "… -
Grant Abstract
An ELSI-Integrated Evaluation of the Family-Level Utility of Pediatric Genomic Sequencing
PROJECT NARRATIVE The goal of the proposed research is to investigate how clinical genomic sequencing impacts families of pediatric patients. This research will develop an empirically informed…- Affect
- American
- Area
- Award
- base
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Grant Abstract
Surfacing values in the economic evaluation of genomic sequencing for diagnosis of children with rare diseases
PROJECT NARRATIVE Though any single rare disease is by definition uncommon, together these diseases affect nearly 30 million individuals in the United States, two-thirds of whom are children, and…- Affect
- Anthropology
- base
- Bioethics
- career
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Grant Abstract
Reporting Adult-Onset Genomic Results to Pediatric Biobank Participants and Parents
Project Narrative The potential benefits and harms of returning genomic results to children and their parents are matters of enduring controversy?especially genomic results for adult-onset conditions…- Address
- Adolescent
- Adolescent Development
- Adult
- Affect
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Grant Abstract
Reporting Adult-Onset Genomic Results to Pediatric Biobank Participants and Parents
The potential benefits and harms of returning genomic results to children and their parents are matters of enduring controversy--especially genomic results for adult-onset conditions that are not…- Adolescent
- Adolescent Development
- Adult
- Affect
- Anxiety
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Grant Abstract
Reporting Adult-Onset Genomic Results to Pediatric Biobank Participants and Parents
Project Narrative The potential benefits and harms of returning genomic results to children and their parents are matters of enduring controversy?especially genomic results for adult-onset conditions…- Address
- Adolescent
- Adolescent Development
- Adult
- Affect
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Grant Abstract
An Experimental Study to Improve Risk/Benefit Appraisal
The specific aims of this research are to develop, implement, and assess the effectiveness of a decision balance risk-benefit component as part of the informed consent process for women deciding to…- African American
- behavioral /social science research tag
- blood disorder diagnosis
- caucasian American
- Decision Making
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Video
Indigenous Peoples & Genomics: Starting a Conversation
This video is linked to the publication: Indigenous Peoples and Genomics: Starting a Conversation Author Names Jenny Morgan Rachel R. Coe Rochelle Lesueur Ruth Kenny Roberta Price Nancy…- Indigenous Peoples
- Genomics