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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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Video
ELSIcon2022 Paper: Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa
ELSIcon2022 • Paper • May 27, 2022 Muyiwa Adigun, Babatunde R. Ojebuyi, Joshua Akinyemi, Kolawole Wahab, Albert Alpalu, Fred S. Sarfo, Lukman F. Owolabi, Rabiu Musbahu, Reginald Obiako, Mayowa…- Laws and research sites
- Biobanking and genomic databases
- Paper
- Pre-Recorded
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Collection
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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Video
Precision Medicine Research, ‘All of Us’, and Inclusion
A Discussion for Journalists • November 16, 2021 This is the third in a series "Genomics in Society: New Developments, New Questions: Discussions with Journalists" hosted by Hastings Center, in…- All of Us
- precision medicine research
- inclusion
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Grant Abstract
Incidental Enhancement: Addressing a Neglected Policy Issue in Human Genome Editing
PROJECT NARRATIVE This project is relevant to public health because achieving the health benefits of preventive gene editing research will depend on governance that is responsive to public concerns.…- Address
- Affect
- Agreement
- Animal Experimentation
- Animals
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Publication
Stimulating professional collective responsibility from the outset in mainstreaming genomics
Journal of Medical Ethics -
Publication
Seizing the policy moment in crop biotech regulation: An interdisciplinary response to the Executive Order on biotechnology
Frontiers in Bioengineering and Biotechnology -
Publication
The Cognitive-Social Health Information Processing (C-SHIP) model: A theoretical framework for research in behavioral oncology
Lawrence Erlbaum Associates, Inc. -
Publication
Blood group research in Great Britain, France, and the United States between the world wars
Yearbook of Physical Anthropology -
Publication
Public eyes and private genes: Historical frames, news constructions and social problems
Social Problems