A single PDF keeps data from trial participants
Participation in clinical trials is daunting for many people — in large part because they’re unable to see their own data. Harvard geneticist George Church, along with Resilience Project director Jason Bobe, propose an overhaul for clinical trial data distribution — and say that it’ll begin with eradicating one surprising roadblock: a single PDF.
A document that materialized on the Centers of Medcare and Medicaid Services site in 2014 revises how Clinical Laboratory Improvement Amendments (CLIA) are interpreted — and “clumsily” deems that sharing trial data with participants is not copacetic.
“Without a more supportive policy environment, even small-scale experiments in more transparent and equitable research practices that involve sharing data from research laboratories are unlikely to happen,” Church and Bobe write.
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