New Illinois Privacy Law For Genetic Test Results

Jan 2, 2020
Originally published on December 30, 2019 9:49 am

Starting with the new year, Illinois will expand privacy protections for people who use genetic testing kits. 

Companies like, 23andMe and others will be prohibited from sharing data – such as selling it to insurance companies where it can be used to set rates.  The tests can show genetic markers used to predict health issues and other traits. 

The new law will require written permission from the test taker before the results can be shared.

Some companies say they already offer an option to have test results destroyed on request from the customer. 

But supporters of the law say as technology grows along with the demand for genetic data, public policy must keep up. 

There have also been reports of drug manufacturers wanting test results to develop new treatments and at least one company admitted giving DNA data to the FBI to help in solving crimes. 

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