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Paying for Cures: The Ethics and Economics of Gene Therapies for Rare Diseases
Rare diseases, most of which have a genetic basis, collectively affect an estimated 300 million individuals worldwide and are associated with significant morbidity and mortality. Although less than…- gene therapy
- sickle cell disease
- health economics
- nusinersen
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Funding Opportunity
NIH Science Education Partnership Award (SEPA) (R25 - Clinical Trial Not Allowed)
- Education activities
- diversity
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Collection
The Disability Rights Critique of Technologies that Eliminate Human Genetic Variation
The development and use of an expanding range of medical technologies that yield genetic information about embryos and fetuses has raised ethical questions about whether and how this increasingly… -
Collection
How Do We Diversify Human Genomics Research?
The lack of diversity in human genomics research and reference datasets is a known problem, with real-life consequences, but the path forward remains elusive. Solutions to the problem of sampling…- genetic diversity
- Admixture
- anti-racism
- FAIR data principles
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Genomics <em>of</em> Education <em>in</em> Education: ELSI Concerns about Genomic Prediction in Educational Settings
Polygenic scores (PGS) for educational traits and outcomes (e.g., math ability, reading ability, and educational attainment) are currently available to the public via direct-to-consumer genetic…- Polygenic scores
- precision education
- learning disabilities
- Pygmalion effect
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Collection
Human Gene Editing and the Ethics of Enhancement
Over the past decade, a new generation of precise and efficient gene editing techniques has brought new urgency and attention to the discussion of the ethics of human enhancement. In 2015, gene…- Genetic Enhancement
- human genome editing governance
- Eugenics
- Health Equity
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Privacy, Security, and Nondiscrimination Best Practices for Direct-to-Consumer (DTC) Genetic Testing Companies
The completion of the Human Genome Project opened new doors for business enterprise. One such activity is direct-to-consumer (DTC) genetic testing, or genetic testing offered on a service-driven…- data privacy
- direct-to-consumer genetic testing
- GINA
- genetic discrimination
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Grant Abstract
Integrating Nurse Champion Model for Group Reproductive Genetic Counseling forSickle Cell Hemoglobinopathies into Primary Care: A Pilot Implementation ScienceStudy
PROJECT NARRATIVE: Genetic counseling and health education are essential components of any early diagnosis program for sickle cell disease to ensure that risk results are effectively communicated by… -
Grant Abstract
University of Michigan Training Program in ELSI Research
PROJECT NARRATIVE Advances in genomic science are rapidly presenting both great opportunities and complex challenges for medicine and public health. In order for the potential benefits of these…- ethical legal social implication
- Michigan
- Research
- Training Programs
- Universities
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Grant Abstract
GURU: Graduate and Undergraduate Researchers of UCEER
PROJECT NARRATIVE The purpose of this R25 Diversity Action Plan grant proposal is to create a program that will equip students with disabilities with mentoring, research, and curricular resources…- Academia
- Address
- Advocate
- Affect
- Applications Grants