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Publication
Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya
BMC medical ethicsDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Publication
Hereditary cancer panel testing challenges and solutions for the Latinx community: Costs, access, and variants
J Community GenetClinical Sequencing Evidence-Generating Research (CSER) Consortium. Grant number(s): R01 CA221870, U01 HG009599 -
Grant Abstract
Organizing the HGI: Social Impact and Technology Design
This sociological study is a prospective field research project on the development of the human genome initiative during the first half of the 1990's. The study is examining how the genomics…- comprehensive medical planning
- Decision Making
- Ethics
- Genome
- health /scientific organization
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Grant Abstract
A Model for Inclusion of Minorities in Genetic Research
Autism is a complex lifelong neurodevelopmental and behavioral disorder that manifests in infancy or early childhood. Although the causes are still unknown, the data suggest that autism and Autism…- advocacy organizations
- Affect
- African American
- Architecture
- Ashkenazim
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Video
Visual Storytelling in ELSI Research
The ELSI Friday Forum was held on Friday, April 14, 2023. “A picture is worth a thousand words” - this widely understood sentiment could play a vital role in ELSI research and communication about…- Visual storytelling
- Community Engagement
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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… -
Video
May 2024 ELSI Friday Forum: Patients as Partners in Sickle Cell Disease Research in Africa: Ethos, Challenges and Lessons Learned
Health research is undergoing a gradual but transformative shift, where patients and study communities no longer want to be passive participants in health research but active collaborators. However,…- ELSI
- Sickle Cell
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Publication
Lowering the burden of hereditary diseases in a traditional, inbred community: Ethical aspects of genetic research and its application
Science in ContextDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Publication
Waiver of individual patient consent in research: When do potential benefits to the community outweigh private rights?
Medical Journal of AustraliaDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National…