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 therapy in 2017, the pipeline has steadily increased such that 20 new gene therapies are expected to be approved each year starting soon. Health system decision makers around the world are facing complex issues related to value, affordability, and equity posed by the high upfront cost of these new therapies. Traditional health economics approaches to assess value are intricately linked to values, the normative aspects of resource allocation decisions. Building upon discussions in the CERA-funded Value Ethics Working Group, this panel presentation will provide an overview of pragmatic and ethical aspects of health technology assessment (HTA) and payment models for gene therapies from an international perspective.
- Renske M.T. ten Ham, PhD, PharmD, MSc (The University Medical Center Utrecht)
- R. Brett McQueen, PhD (University of Colorado Anschutz Medical Campus)
- Moderated by Hadley S. Smith, PhD, MPSA (Harvard Medical School, Harvard Pilgrim Health Care Institute)
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Videos in Series

ELSI Friday Forum - Visual Storytelling in ELSI Research

ELSI Friday Forum - Indigenizing Genomics and Advancing Indigenous Data Sovereignty

ELSI Friday Forum - Wrestling with Social and Behavioral Genomics

ELSI Friday Forum - Genetic Advantages in Sports: When Do They Count as "Doping"?

ELSI Friday Forum - Genetics and AI: Group Privacy and Fairness

ELSI Friday Forum - Advocacy and Allyship in ELSI: Opportunities and Challenges

ELSI Friday Forum - Decoloniality and Genetic Ancestry: Situating the "African Genome"

ELSI Friday Forum - Legal Challenges to Newborn Screening Research

ELSI Friday Forum - Impact of SCOTUS's Dobbs Decision on Prenatal Genomics Research and Practice

ELSI Friday Forum - Addressing Algorithmic Harms: Practices and Provocations for Health AI

ELSI Friday Forum - Balancing Data Privacy and Data Sharing: Normative and Technical Approaches

ELSI Friday Forum - Genomic Imaginaries: Sparking Dialogue between ELSI and Literary Studies

ELSI Friday Forum - Ensuring Equitable Use of New Genetic Technologies: Lessons from Eugenics

ELSI Friday Forum - New ACMG Guidance on Carrier Screening: More or Less Equitable?

ELSI Friday Forum - Benefit-sharing and Pharmaceutical Development in Africa: What Does Equity Mean?
ELSI Friday Forum - Genomic Data Sharing: Putting Principles and Policy into Practice
ELSI Friday Forum - Current Legal Challenges to Abortion: Implications for Prenatal Genetics
ELSI Friday Forum - Ethical Challenges in Novel Gene Therapies for Sickle Cell Disease

ELSI Friday Forum - Widening the Lens: Using Arts in ELSI Research

ELSI Friday Forum - Migrant DNA: Context, Ethics and Legal Issues

ELSI Friday Forum - Genomics and Infectious Disease: Scientific and ELSI Issues of COVID

ELSI Friday Forum - ELSI Friday Forum: Biobanking in the Era of COVID

ELSI Friday Forum - Addressing Racism in Research and Clinical Practice
