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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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Grant Abstract
Organizational and Cultural Dynamics in Genomics Companies: Industry Engagement in Navigating Social and Ethical Issues
This Pathway to Independence Award (K99/R00) investigates and leverages perspectives from members of the health-related private sector genomics industry, to develop guidance for improving approaches…- Address
- Agreement
- American
- Area
- Attention
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Grant Abstract
Respect for Persons in the Genomics Research Enrollment Process: Incorporating Diverse Experiences and Attitudes
PROJECT NARRATIVE This project will identify ways to demonstrate respect to prospective research participants that incorporate the perspectives of diverse patient populations who have been…- Advisory Committees
- Asians
- Attitude
- Award
- base
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Grant Abstract
Organizational and Cultural Dynamics in Genomics Companies: Industry Engagement in Navigating Social and Ethical Issues
This Pathway to Independence Award (K99/R00) investigates and leverages perspectives from members of the health-related private sector genomics industry, to develop guidance for improving approaches…- Address
- Agreement
- American
- Area
- Attention
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Grant Abstract
Genomics-based Technologies: Access and Reimbursement Issues
Genomics-based technologies are increasingly used in clinical care and are highly relevant to public health because of their potential use in assessing risk, diagnosing, and developing treatment…- Algorithms
- anticancer research
- base
- Biology
- cancer therapy
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Grant Abstract
Organizational and Cultural Dynamics in Genomics Companies: Industry Engagement in Navigating Social and Ethical Issues
This K99/R00 Award is designed to generate scholarship and interventions to guide genomics companies towards more just practices. It does so through a five-year training and research project, which…- Agreement
- American
- Area
- Attention
- Award
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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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News
Collaborating with CERA
How can I collaborate with CERA? The Center for ELSI Resources and Analysis (CERA) is pleased to collaborate with individuals and organizations who share the mission of enhancing the production,…