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 2022 - Genetic Advantages in Sports: When Do They Count as "Doping"?
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ELSI Friday Forum 2022 - Genetics and AI: Group Privacy and Fairness
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ELSI Friday Forum 2022 - Decoloniality and Genetic Ancestry: Situating the "African Genome"
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ELSI Friday Forum 2022 - Legal Challenges to Newborn Screening Research
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ELSI Friday Forum 2022 - Impact of SCOTUS's Dobbs Decision on Prenatal Genomics Research and Practice
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ELSI Friday Forum 2022 - Addressing Algorithmic Harms: Practices and Provocations for Health AI
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ELSI Friday Forum 2022 - Balancing Data Privacy and Data Sharing: Normative and Technical Approaches
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ELSI Friday Forum 2022 - Autism Genomics Research: Parents’ Views on Genetic Results and Autistic Representation
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ELSI Friday Forum 2022 - Genomic Imaginaries: Sparking Dialogue between ELSI and Literary Studies
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ELSI Friday Forum 2022 - Ensuring Equitable Use of New Genetic Technologies: Lessons from Eugenics