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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… -
Video
ELSIcon2022 Paper: Community Perspectives on Electronic Consent Education for the Retention of Newborn Screening Bloodspots
ELSIcon2022 • Paper • May 27, 2022 Erin Rothwell, Caren Frost, Bob Wong, Erin Johnson Promoting informed decision making for research while concurrently advancing equity and justice for underserved…- Attitudes about sharing biological samples and health data
- Biobanking and genomic databases
- Paper
- Pre-Recorded
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Publication
Models of Data Governance and Advancing Indigenous Genomic Data Sovereignty
Knowledge Discovery and Data Mining -
Publication
Inclusivity and diversity: Integrating international perspectives on stem cell challenges and potential
Stem Cell Reports -
Collection
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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Publication
Balancing ethics and culture: A scoping review of ethico-cultural and implementation challenges of the individual-based consent model in African research
Journal of Empirical Research on Human Research Ethics -
Publication
Knowledge and attitudes about privacy and secondary data use among African-Americans using direct-to-consumer genetic testing
Public Health GenomicsParticipants in this study by Ziegler and colleagues found secondary research use of their data acceptable depending on the type of research being pursued. However, about half stated that use by law… -
Grant Abstract
Prenatal Diagnosis and the Selection of Children
Given the current and anticipated capabilities to perform prenatal diagnosis, the medical profession, and society more broadly, must decide how these technologies should be used. Specifically, what…