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1 - 10 of 718 Topics
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Grant Abstract
Informing the Navajo public about genetic research and policy
Project Summary Navajo people (the Diné) experience more health disparities compared to the general population and have higher prevalence of certain genetic diseases and disorders. There is limited…- data sharing
- community based research
- indigenous community
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Grant Abstract
Investigating ethical challenges in emerging precision medicine research with disability communities: The case of cerebral palsy
Innovations in precision medicine are rapidly changing scientific understandings of the causes of and potential treatments for the broad range of health conditions affecting the one-in-four Americans…- disability
- ableism
- precision medicine
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Grant Abstract
Ethical, Legal, Social Implication Core
ABSTRACT - Ethical, Legal and Social Implications Core The Human Virome Program (HVP) will build on its predecessors, the Human Genome Program (HGP) and the Human Microbiome Program (HMP), which also…- COVID-19 pandemic
- Consent Forms
- microbiome research
- social stigma
- benefit sharing
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Grant Abstract
Ethical, Legal, and Social Implications (ELSI) Core: Providing guidance to protect participants
Project Summary: The Ethical, Legal, and Social Implications (ELSI) Core The ELSI Core will ensure the protection of participants, investigators, and staff in matters of privacy, safety, and legality…- Bioethics Consultants
- Forensic Medicine
- Incidental Findings
- Life Cycle Stages
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Grant Abstract
Human Virome Characterization Center for the Oral-Gut-Brain Axis
Ethical, Legal, and Social Implications Core: Abstract The Human Virome Program (HVP), which aims to broadly characterize the composition of the human virome across the lifespan in longitudinal,…- gut-brain axis
- mutual learning
- informed consent
- human virome
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Grant Abstract
VAST Center: Viromes Across Space(s) and Time
ELSI CORE ABSTRACT The VAST ELSI core aims to synchronize across all VAST cores to critically engage and innovatively approach the understanding of human Viromes in research particularly in the…- Indigenous
- northern plains
- Ownership
- data privacy
- Consent Forms
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Grant Abstract
ELSI Core
Meaningful research in the Human Virome Program (HVP) will require the collection of vast amounts of information - a process that raises a host of novel ethical, legal, and social implications (ELSI…- All of Us Research Program
- Hispanic/Latino Populations
- privacy protection
- risk mitigation
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Grant Abstract
The ethics of engagement in patient-focused drug development for rare diseases
Project Summary: Patient and family groups (PFGs) have long supported rare disease research as fundraisers and advisers. But today, they increasingly drive the research agenda, working in partnership…- Intellectual Property
- Patient-Focused Outcomes
- rare genetic disorder
- patient engagement
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Grant Abstract
Adults with childhood-onset genetic disease: planning for the future amid therapeutic innovation
Project Summary: The outlook for many childhood-onset genetic conditions has markedly improved in the last few decades because of specialized care, supportive treatment, and the introduction of…- Cystic Fibrosis
- novel therapeutics
- therapeutic development
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Grant Abstract
You Gave Consent but Do I Have Permission?
PROJECT NARRATIVE The proposed research is relevant to ethical, legal, and social implications of genomic information sharing as it focuses on evaluating information models which support stewardship…