Genomics-Informed Government Policy: Starting the Conversation with Policymakers OnDemand-Presentation

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Video Summary

This ACMG webinar explores effective advocacy strategies to inform government policy on genomics, featuring experts from diverse backgrounds including health policy, government affairs, clinical genetics, and state legislation. Panelists emphasize the critical importance of knowing your audience, tailoring communication to policymakers' priorities—particularly economic impact—and avoiding jargon to foster understanding. Personal patient stories are highlighted as powerful tools for illustrating the real-world importance of genomic advances alongside data on healthcare outcomes and costs.<br /><br />Speakers reflect on changing dynamics in policymaker engagement over recent decades, noting variability across administrations and between federal and state levels. State legislatures are described as active arenas for impactful, bipartisan legislation due to their proximity to constituents and flexibility, offering opportunities distinct from the often gridlocked federal process. Effective engagement involves understanding legislative staff structures and focusing on building relationships with influential legislative aides who craft policy recommendations.<br /><br />The discussion underscores challenges around genomics data privacy, with states like Montana pioneering strong individual consent protections, reflecting public concerns about data misuse by private and pharmaceutical entities. Advocates are encouraged to be proactive, self-regulate, and align messaging with ethical safeguards.<br /><br />Panelists advise advocates to collaborate broadly, craft concise one-pagers summarizing pros, cons, and recommendations, and use multimedia tools to enhance comprehension. They stress the value of persistent engagement—whether calling, writing, or meeting locally or in DC—and the power of clear, relatable communication to influence policymaking. Ultimately, the session reinforces that advocacy success stems from strategic, authentic, and audience-aware efforts rooted in evidence and human impact.

Keywords

ACMG webinar

genomics advocacy

government policy

health policy

clinical genetics

state legislation

policymaker communication

patient stories

data privacy

legislative engagement