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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
New Frameworks for Informed Consent in Genomic and Precision Medicine
The emergence of genomic medicine has not been without unique concerns that continue to challenge clinicians working in this arena. Genomic test results have implications for individuals other than…- base
- Benefits and Risks
- Big Data
- biotechnology
- Books
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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… -
Grant Abstract
Return of Research Results from samples obtained for Newborn Screening
In order to maximize the potential benefit of research using newborn screening residual dried blood samples (DBS), a paradigm shift will be necessary to develop an infrastructure in which parental…- biobank
- Biochemical
- Bioethics
- Blood specimen
- clinical care
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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, "… -
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… -
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
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Video
ELSIcon2022 Paper: Return of Secondary Genomic Findings: Experiences of Sickle Cell Disease Research Participants
ELSIcon2022 • Paper • June 2, 2022 K. Jameson Floyd, Ashley Buscetta, Vence Bonham While the body of research investigating research participants’ views on the return of actionable…- Live
- Paper
- Return of Results
- health disparities
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Video
November 2024 EFF: Material (Mis)Identities: Art, Genes and Ethics
How can genetically-incorporated art examine, highlight, and challenge existing social constructs such as the formation of racial identity? This ELSI Friday Forum explored this question and focused…- Humanities and the Arts
- race and bioethics
- Genes