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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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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… -
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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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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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