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Patient Perspectives on Uncertainty in Genomic Medicine
All medical information is subject to uncertainty, but the practice of medical genetics is characterized by unique magnitudes and forms of uncertainty. In fact, for many patients, a “positive”…- variant of uncertain significance
- incidental finding
- patient experience
- clinical decision-making
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Empirical Evaluation of Arts-Based Informational Aids for ELSI Issues in the Clinic and Beyond
The rapidly changing science of clinical genetics and the complexity of its associated ethical, legal, and social (ELSI) issues call for novel approaches to information delivery and education of…- Genetics education
- popular culture
- science education
- Arts
- Informational aids
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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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Realizing the Self-Determination Goals of Indigenous People in Genetics Research
Self-determination and tribal sovereignty are core concepts in the lives and histories of Indigenous Peoples. Within the United States, the peoples of the American Indian and Alaska Native tribes are…- Indigenous Peoples
- Genetics Research
- data sovereignty
- Indigenous Communities
- Community Engagement
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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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Screening Embryos for Psychiatric Conditions: Public Perspectives, Ethical and Social Issues
The number of genomic loci identified to be associated with psychiatric disorders have substantially increased over the last decade. Alongside developments in polygenic embryo screening (PES; or PGT-…- polygenic embyro screening
- Polygenic risk scores
- Psychiatry
- Reproductive Decision Making
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Dataveillance and Human Rights
Nearly 75 years ago, countries agreed to an International Bill of Human Rights, that included, among other fundamental rights, a right to privacy, a right to science, and a right to health. Cohesive…- data privacy
- data justice
- public health surveillance
- HIPAA
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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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Ethical Challenges in Obtaining Informed Consent for Genetic/Genomic Research
Obtaining informed consent (IC) for genetic/genomic research is complicated because most of the ethical issues associated with genetic research are considerations to be disclosed by researchers and…- Informed Consent
- Genetic Research
- research oversight
- Broad Consent
- Communication
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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…