Industry supports Connecticut genetic‑privacy bill; pathologists urge medical testing carveouts
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Summary
Ancestry and other direct‑to‑consumer firms backed HB5128 requiring express consent and deletion rights for genetic data but opposed a private right of action. Medical laboratory groups asked for explicit exclusions for physician‑ordered CLIA‑regulated tests and for laboratory proficiency requirements.
Companies that provide direct‑to‑consumer genetic testing and privacy advocates largely supported HB5128, a bill that would give Connecticut residents greater control over genetic data and limit use for targeted advertising, but several medical groups urged careful drafting so clinical diagnostic testing is not inadvertently regulated.
Richard Engelhardt of Ancestry said the bill follows best practices that the industry has adopted since 2012, including express consent for genetic data use and deletion rights. He and other industry witnesses urged agency enforcement — rather than a broad private right of action — to avoid frivolous litigation and to provide an expert enforcement mechanism.
Pathologists and medical laboratory representatives told the committee they support consumer protections but cautioned that the draft bill could unintentionally apply to physician‑ordered, CLIA‑regulated laboratory testing. Dr. Christine Minorovich (Connecticut Society of Pathologists) asked the committee to add an explicit exclusion for medically supervised testing and require that DTC testing meet laboratory proficiency standards comparable to CLIA, to avoid patient harm from inaccurate results.
Committee members and the AG's office acknowledged those concerns and signaled willingness to consider amendments to preserve clinical diagnostics while protecting DTC consumers. No formal amendments were adopted at the hearing.
The debate highlighted the tension between consumer privacy protections and maintaining clinical laboratory standards: stakeholders recommended narrow statutory language to limit the bill to DTC genetic services while requiring laboratory quality safeguards where appropriate.
