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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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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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Biocolonialism and Other “Western”-Centered Bioethical Failures Onto Indigenous Peoples
There are complex, historical reasons why global Indigenous peoples have largely not engaged in genetics and genomics research. For example, if we look to the 1990s and early 2000s, global Indigenous…- Indigenous
- genetic data
- genetic ancestry
- decolonization
- Indigenous data
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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
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Advancing Ethical Engagement and Benefit Sharing Within International Collaborative Genomic Research Partnerships in Africa
Due to advances in genomic sequencing and reduced costs, the development of statistical techniques and technologies for analysis of large datasets, and a scientific interest in population-specific…- ethical engagement
- benefit sharing
- Africa
- Collaborations
- genomic research
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Establishing Gender-Affirming Genetic Counseling Services
Transgender (trans) describes an individual whose gender identity differs from the sex they were assigned at birth. In the U.S., approximately 2.6 million people (~1% of the population) identify as…- TGDI
- gender affirming care
- intersex
- transgender
- gender-diverse
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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 Literature and Film Shape and Reflect Public Attitudes toward Genetics
Powerful works of art enrich our understanding of the issues that matter most in our lives—not least in controversial areas of the biosciences. By exploring the dense cultural networks that shape…- Narratives
- Film
- Literature
- public attitudes
- race and genetics
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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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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