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Video
Benefit-sharing and Pharmaceutical Development in Africa: What Does Equity Mean?
ELSI Friday Forum • November 12, 2021 There is an ongoing concern that collaborative genomic research conducted in lower- and middle-income countries by partners in high-income countries, is…- benefit sharing
- African genetics
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Video
ELSIcon2022 Paper: The definition and handling of genomic data in a digitalized society: A Japanese perspective
ELSIcon2022 • Paper • May 27, 2022 Jusaku Minari The development of genomic research increasingly contributes to the understanding, diagnosis, and treatment of various diseases, including…- Education and public reception of genetic science
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Paper: Seeking Diverse Inclusion in Bipolar Research: Lessons from a biobank
ELSIcon2022 • Paper • June 1, 2022 Karen Meagher, Monica Taylor-Desir How should biobanks recruit diverse cohorts from historically marginalized communities? Should they measure diversity via…- Live
- Paper
- Recruiting diverse participants to precision medicine research
- genomics research
- Biobanks
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Video
New ACMG Guidance on Carrier Screening: More or Less Equitable?
ELSI Friday Forum • December 10, 2021 Next-generation sequencing capabilities have enhanced general population carrier screening by expanding the number of genes and variants on carrier screening…- carrier screening
- Genetic Counseling
- ethics of prenatal testing
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Video
ELSIcon2022 Panel: The All of Us Responsible Conduct of Research Training: Fostering Ethical and Socially Responsible Research with Data from All of Us Participants
ELSIcon2022 • Panel • May 27, 2022 Katherine Blinzinsky, Subhashini Chandrasekharan, Sonya Jooma The All of Us Research Program is an ambitious effort to enroll one million or more…- Pre-Recorded
- Panel
- Data and data stewardship
- precision medicine
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Video
ELSIcon2022 Panel: If we build it will they come? Navigating ELSI considerations for broad and responsible use of All of Us data by non-traditional researchers
ELSIcon2022 • Panel • June 3, 2022 Subhashini Chandrasekharan, Laura Beskow, Rosario Isasi, Stephen Sodeke The All of Us Research Program is in the process of collecting biospecimens and…- Live
- Panel
- Data and data stewardship
- precision medicine
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Video
Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions
This ELSI Friday Forum took place on September 8, 2023. Since application of the first individualized therapy in 2019, development of these bespoke treatments has expanded rapidly. Individualized…- Ultrarare Diseases
- N-of-1
- Individualized Therapies
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Video
ELSIcon2022 Paper: Systematic review of recommendations on the use of race, ethnicity and ancestry in the context of genetics research
ELSIcon2022 • Paper • May 27, 2022 Madelyn Mauro, Anna Lewis The appropriate use of population descriptors in genetics and beyond has been an often visited topic. Here we present the results of a…- Language and categorization
- Ethnicity
- Use of race and ancestry in research and the clinic
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Paper: Resisting an old vice, or how polygenic risk information can do the most good
ELSIcon2022 • Paper • May 27, 2022 Jackson Ennis, Richard Sharp, Joel Pacyna Once upon a time, polygenic risk information was mostly a proprietary feature of direct-to-consumer genetic testing.…- polygenic risk
- Education and public reception of genetic science
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Paper: Investigating an Ethos of Duty in Precision Medicine Research Calls for Minority Participation
ELSIcon2022 • Paper • May 27, 2022 Rachel Bailey A rhetorical utility of identity may provide a novel method of inquiry for bioethics research. To increase diversity of Precision Medicine (PM…- Pre-Recorded
- Paper
- Motivation to participate in research
- Education and public reception of genetic science