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Grant Abstract
Identifying strategies to reveal genetic results over the lifespan
PROJECT NARRATIVE If healthy babies are sequenced near birth, when should genetic information relevant to later stages of their lives be revealed? There are different possible strategies for when…- Decision making
- Specific qualifier value
- screening panel
- Genetic Diseases
- genetic screening
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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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In the Media
‘All of Us’ reports half of the genomes it has sequenced are from non-Europeans
STAT News |Six years ago, the National Institutes of Health placed its biggest ever bet on precision medicine, launching a study to enroll over 1 million participants in an ambitious data-gathering…- All of Us Research Program
- Pangenome
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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… -
In the Media
23andMe Breach Targeted Jewish and Chinese Customers, Lawsuit Says
The New York Times |The class-action suit said the genetic testing company failed to notify customers whose personal information was compiled into “curated” lists that were sold on the dark web.- 23andMe
- genetic data
- Biobanking and genomic databases
- breaches of confidentiality
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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… -
In the Media
U.K. approves world’s first CRISPR-based medicine, giving green light to therapy for sickle cell, thalassemia
Stat News |Regulators in the U.K. on Thursday approved a CRISPR-based medicine to treat both sickle cell disease and beta thalassemia, making it the world’s first therapy built on the revolutionary gene-editing…- CRISPR
- CRISPR gene therapy
- Sickle Cell
- Thalassemia
- gene therapy
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Funding Opportunity
Ethical, Legal and Social Implications (ELSI) Small Research Grant (R03 Clinical Trial Optional)
- ELSI