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Publication
Evaluation of CTRL: A web application for dynamic consent and engagement with individuals involved in a cardiovascular genetic disorders cohort
European Journal of Human Genetics -
Publication
Improving gender-affirming care in genetic counseling: Using educational tools that amplify transgender and/or gender non-binary community voices
Journal of Genetic Counseling -
Publication
Un/Diagnosed: Family experience of genomic diagnoses and the re-making of (rare) disease in the UK
Medical Anthropologyby Alessia Costa -
Video
ELSIcon2022 Paper: Toward an anthropology of rare disease
ELSIcon2022 • Paper • May 27, 2022 Meghan Halley, Colin Halverson, Marsha Michie Rare genetic diseases affect an estimated 330 million individuals worldwide. These patients often struggle to…- Lived experience of genetic conditions
- equity and justice in genetics
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Paper: Genetic data and the collective good: participants as leaders to reconcile individual and public interest
ELSIcon2022 • Paper • June 2, 2022 Ilaria Galasso, Susi Geiger This paper problematizes the notion of collective good in the contest of medical research and juxtaposes consequentialist and…- Live
- Paper
- Data and data stewardship
- equity and justice in genetics
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Publication
Nothing for me or about me, without me: Codesign of clinical decision support
Applied Clinical Informatics -
Publication
Role of genomics literacy in reducing the burden of common genetic diseases in Africa
Molecular Genetics & Genomic -
Publication
Governance of heritable human gene editing world-wide and beyond
International Journal of Environmental Research and Public Health