Twisted Helix: Can Public-Private Partnership Genomic Projects Be Fair and Equitable?
Biotechnological innovation almost always entails all three strands of the triple helix: academia, government, and industry. This is increasingly true for large scale genomics and biomedical research projects such as the Human Pangenome Reference Consortium, and the Earth BioGenome, Human Cell Atlas, and BRAINshare projects, which include commercial uses of data and samples. Five decades after biotechnology became a Big Thing in Silicon Valley, both Cambridges, and elsewhere, concerns about pricing and access to health goods and services breed skepticism that the innovation ecosystem is fair and equitable. We will discuss several concrete cases in which public-private partnerships have raised ethical issues and address whether and how ELSI scholars might be useful in making the system more transparent, fair, and trustworthy.
Moderator: Alexis Walker, PhD
Panelists: Bob Cook-Deegan, MD and Brad Malin, PhD
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Videos in Series
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ELSI Friday Forum - The Genomics of PTSD Risk: Scientific and Ethical Perspectives
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ELSI Friday Forum - Population Descriptors in Genomic Research: Applying the NASEM Recommendations
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ELSI Friday Forum - Legal and Policy Challenges to Privacy in the Post-Genomic and Post-Dobbs Era
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ELSI Friday Forum - Value and Values in Payment for Gene Therapies
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ELSI Friday Forum - Visual Storytelling in ELSI Research
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ELSI Friday Forum - Indigenizing Genomics and Advancing Indigenous Data Sovereignty
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ELSI Friday Forum - Wrestling with Social and Behavioral Genomics
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ELSI Friday Forum - Genetic Advantages in Sports: When Do They Count as "Doping"?
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ELSI Friday Forum - Genetics and AI: Group Privacy and Fairness
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ELSI Friday Forum - Advocacy and Allyship in ELSI: Opportunities and Challenges
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ELSI Friday Forum - Decoloniality and Genetic Ancestry: Situating the "African Genome"
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ELSI Friday Forum - Legal Challenges to Newborn Screening Research
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ELSI Friday Forum - Impact of SCOTUS's Dobbs Decision on Prenatal Genomics Research and Practice
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ELSI Friday Forum - Addressing Algorithmic Harms: Practices and Provocations for Health AI
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ELSI Friday Forum - Balancing Data Privacy and Data Sharing: Normative and Technical Approaches
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ELSI Friday Forum - Genomic Imaginaries: Sparking Dialogue between ELSI and Literary Studies
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ELSI Friday Forum - Ensuring Equitable Use of New Genetic Technologies: Lessons from Eugenics
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ELSI Friday Forum - New ACMG Guidance on Carrier Screening: More or Less Equitable?
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ELSI Friday Forum - Benefit-sharing and Pharmaceutical Development in Africa: What Does Equity Mean?
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ELSI Friday Forum - Genomic Data Sharing: Putting Principles and Policy into Practice
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ELSI Friday Forum - Current Legal Challenges to Abortion: Implications for Prenatal Genetics
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ELSI Friday Forum - Ethical Challenges in Novel Gene Therapies for Sickle Cell Disease
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ELSI Friday Forum - Widening the Lens: Using Arts in ELSI Research
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ELSI Friday Forum - Migrant DNA: Context, Ethics and Legal Issues
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ELSI Friday Forum - Genomics and Infectious Disease: Scientific and ELSI Issues of COVID
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ELSI Friday Forum - ELSI Friday Forum: Biobanking in the Era of COVID
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ELSI Friday Forum - Addressing Racism in Research and Clinical Practice
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ELSI Friday Forum - ELSI Friday Forum: Structural Racism and Genomics in the Time of COVID