Advocacy and Allyship in ELSI: Opportunities and Challenges
Objectivity is a weight-bearing pillar in scientific inquiry, a norm to ensure that research and its outcomes are “value free” and unaffected by subjective value judgement. Yet ELSI research, as a field, is also poised to engage, take stands, and advocate for science-based policies and courses of actions that respond to societal needs. ELSI researchers and professional genetic associations face vexing questions about how to balance the two goals and responsibilities, especially amidst intense political polarization. What are the responsibilities of individuals and organizations involved in ELSI research? How are topics for collective policymaking selected, developed, and implemented? What are the limitations and challenges in building like-minded coalitions and influencing practice? What are the risks and benefits associated with advocacy in ELSI and the trade-offs between them? Building on real-world events, such as the Dobbs decision and Buffalo shooter’s manifesto, and statements by professional genetic organizations such as the American Society for Human Genetics and Association of Professors of Human and Medical Genetics, this webinar will explore the value, importance, upsides, and downsides of advocacy and allyship in ELSI research.
Join the discussion with panelists Kyle Brothers, MD, PhD and Shoumita Dasgupta, PhD, moderated by Robert Cook-Deegan, MD.
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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 - 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