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Ethical Issues Related to Research Uses of Residual Dried Bloodspots from Newborn Screening
Newborn screening for metabolic and genetic disease is arguably one of the greatest public health interventions—notwithstanding some ethical challenges and opportunities for improvement—because it…- residual specimen
- Newborn screening
- genetic disease
- public attitudes
- Consent
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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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The Evolution of Race and Population Identifiers in Scientific Thought and Practice
The fields of genetics and genomics are at a historically significant crossroads. After more than a century of criticism concerning the use of racial categories in human biological research (by a…- scientific racism
- population identifiers
- NASEM
- colonialism
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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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Technologies to Operationalize Indigenous Data Sovereignty
Throughout history, data about Indigenous communities, cultures, and territories have been collected and collated through research and surveillance as part of processes of colonisation and…- Indigenous data
- Indigenous Communities
- Big Data
- decolonization
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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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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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Ethical, Legal, and Social Implications (ELSI) at the Intersection of Genomics and Infectious Disease
Scientific and technological advances in the field of genomics have the potential to enable targeted clinical and public health measures to manage infectious disease outbreaks. The convergence of the…- genomics and infectious disease
- Covid-19
- ethical conduct of phylogenetic studies
- host genome testing
- data justice
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Game of Bones: Power, Ethics, and Emerging Technology in Paleogenomics Research
The field of paleogenomics is exploding. More ancient genomes were sequenced in 2019 than in all of history. According to The Economist, in 2018, oil was the most traded global commodity. However, in…- paleogenomics
- ancient DNA
- emerging technology
- Indigenous Peoples
- archaeology