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Video
Value and Values in Payment for Gene Therapies
The ELSI Friday Forum was held on May 12, 2023. Advances in gene therapies for monogenic disorders have brought hope of curative treatment. Since the Food and Drug Administration first approved a…- gene therapies
- cost of gene therapies
- payment
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Video
ELSIcon2022 Paper: The 'Lived Experience' of Pediatric Gene Therapy - A Scoping Review
ELSIcon2022 • Paper • May 27, 2022 Laura Kimberly, Cara Hunt, Ryan Dieudonne, Alix Hall, Pat Furlong, Andrew McFadyen, Alison Bateman-House, Jennifer DeSante-Bertkau Little is known about patients…- Motivation to participate in research
- Gene therapy and gene editing
- Paper
- Pre-Recorded
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Video
Ethical Challenges in Novel Gene Therapies for Sickle Cell Disease
ELSI Friday Forum • June 11, 2021 Pilar Ossorio, JD, PhD, moderates this session with panelists Liza-Marie Johnson, MD, MPH, MSB, and Melissa Creary, PhD, MPH, describing the…- sickle cell disease
- Gene Therapy / Gene Transfer
- Genetic Intervention
- Gene Transfer
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Video
ELSIcon2022 Paper: Democratizing Knowledge for Sickle Cell Disease Gene Therapy: A Deliberative Stakeholder Engagement Approach
ELSIcon2022 • Paper • June 3, 2022 Kiana Amini, Vence Bonham The advent of genetic therapy technologies implicates both tremendous therapeutic promise and potential risk. Sickle cell disease…- Live
- Paper
- Gene therapy and gene editing
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Video
ELSIcon2022 Plenary: Troubled Dreams: Genetics, Race, and the Search for Justice in Sickle Cell Disease
ELSIcon2022 • Plenary Session • June 2, 2022 Welcome and Introduction by Sandra Soo-Jin Lee, PhD. Plenary: "Gene Editing and Gene Therapy: The Case of Sickle Cell " presented by Keith Wailoo,…- Live
- Plenary Session
- Stigma and discrimination
- Gene Editing
- Sickle Cell
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Video
ELSIcon2022 Flash: Distributional Cost-Effectiveness Analysis to Incorporate Health Equity Concerns in the Assessment of the Value of Precision Medicine Technologies
ELSIcon2022 • Flash • May 31, 2022 Cheng Chen, Jeroen Jansen BACKGROUND: Distributional cost-effectiveness analysis (DCEA) has been recently proposed as an intuitive extension of conventional…- Live
- Flash
- tools
- Health Disparities
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Video
Will it be easier to cure sickle cell disease through gene therapy than prevent the disease through pre-implantation genetic testing for the selection of unaffected embryos?
ELSIcon2022 • Pre-recorded Flash Jeanne O'Brien, MD, MSc - Shady Grove Fertility, Rockville MD Sigal Klipstein, MD - InVia Fertility Specialists Joshua Combs - Eunice Kennedy Shriver National…- gene therapy
- Gene Editing
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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
ELSIconversations ELSICon2022: Access to Genetic Screening and Therapies: Case Study of Sickle Cell Disease
Co-Moderators: Liza Johnson, MD, MPH, MSB & Mildred Cho, PhD Presenters: Jeanne O'Brien, MD, MSc & Joshua Combs, MD, FACOG Link to pre-recorded video: Will…- Genetic Screening
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Video
Genetic Advantages in Sports: When Do They Count as "Doping"?
What is the essence of sports, and how does that impact the way doping is defined? The sports world is already preparing for an inevitable wave of "gene-doping" as gene-transfer technologies advance…- Doping In Sports
- Sports
- Genetic Enhancement
- genetic therapy
- Gene Transfer