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HB 4556

GENETIC INFO PRIVACY-BIOMARKER

104th Regular Session Introduced by Maurice West

Illinois bill establishing genetic information privacy protections limiting employer, insurer, and third-party use of biomarker data without explicit consent.

Filed with the Clerk by Rep. Maurice A. West, II
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Bill Summary · HB 4556

Legislative bill overview

HB 4556 proposes privacy protections for genetic information and biomarker data in Illinois. The bill establishes restrictions on how genetic data can be collected, used, and shared by entities including employers, insurers, and healthcare providers. It creates consumer rights regarding access to and control over their genetic information.

Why is this important

Genetic and biomarker data is increasingly valuable to insurers, employers, and researchers, raising concerns about discrimination and privacy erosion. Without clear legal protections, individuals could face insurance rate increases, employment discrimination, or unauthorized data sharing based on their genetic predispositions. This bill addresses a significant gap in Illinois law as genetic testing becomes more common in medical and direct-to-consumer contexts.

Potential points of contention

  • Insurance and employment implications: Insurers and employers may argue restrictions limit their ability to assess risk or make informed hiring decisions, while privacy advocates worry about genetic discrimination regardless of restrictions
  • Research and innovation balance: Biomedical researchers may contend that strict data controls hinder beneficial genetic research and treatment development
  • Enforcement and compliance costs: Small healthcare providers and laboratories could face substantial compliance burdens and liability exposure if enforcement mechanisms are broad
  • Definition scope: Disagreement likely over what qualifies as "biomarker data" and whether the law covers raw genetic data, ancestry information, or health-predictive analytics

Compiled from official sources — confirm details with the bill’s official record.

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